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Exploring experiential differences in everyday activities – A focused ethnographic study in the homes of people living with memory-led Alzheimer's disease and posterior cortical atrophy 探索日常活动中的体验差异--在记忆主导型阿尔茨海默病和后皮质萎缩患者家中进行的重点人种学研究
IF 2.3 3区 社会学 Q2 GERONTOLOGY Pub Date : 2024-04-06 DOI: 10.1016/j.jaging.2024.101226
Emma Harding , Mary Pat Sullivan , Paul M. Camic , Keir X.X. Yong , Joshua Stott , Sebastian J. Crutch
<div><h3>Background</h3><p>Supporting ageing in place, quality of life and activity engagement are public health priorities for people living with dementia, but little is known about the needs and experiences of community-dwelling people with rarer forms of dementia with lesser known symptoms. Posterior cortical atrophy (PCA) is a rare form of dementia usually caused by Alzheimer's disease but which is characterised by diminished visual processing (rather than a dominant memory problem), which poses challenges for maintaining independence and accessing appropriate support.</p></div><div><h3>Methods</h3><p>This study used a comparative qualitative design and focussed ethnographic methods to explore experiential differences in activity engagement for 10 people with the most common, memory-led presentation of Alzheimer's disease and 10 people with posterior cortical atrophy within their everyday home environments.</p></div><div><h3>Results</h3><p>While the data collection revealed much rich variation in individual and contextual factors, some tentative high-level differences in the experiences of everyday activities could be drawn out, seemingly attributable to the different diagnoses' differing dominant symptoms. These included people with posterior cortical atrophy being less likely to use environmental cues to initiate activities, and more likely to withhold from asking for support because of preserved insight into the impact of this on carers. This lack of initiation of activities could be misinterpreted as apathy. People with posterior cortical atrophy also were discouraged from engaging in activities by disorientation within the home, and difficulties localising, identifying and manipulating objects. People with the more common, memory-led presentation of Alzheimer's disease exhibited more memory-based difficulties with engaging with activities such as forgetting planned activities, where to locate the items required for an activity and the steps involved. Despite these distinct symptom-led challenges, all participants and their family members demonstrated resourcefulness and resilience in making creative adaptations to support continued engagement in everyday activities, supporting the widely reported management strategies of people with dementia of the Alzheimer's type more generally.</p></div><div><h3>Conclusions</h3><p>These findings offer helpful insights into some the differing impacts dementia related visual and memory impairments can have on everyday activity engagement, which will be helpful for others navigating these challenges and the health and social care practitioners working with people affected by these conditions. The findings also highlight the vast individual variation in the multitude of individual and contextual factors involved in everyday activity engagement, and suggest important areas for future work utilising methods which are similarly high in ecological validity and accessibility as the home-based focussed ethnogra
背景支持居家养老、提高生活质量和参与活动是痴呆症患者的公共卫生优先事项,但人们对症状较罕见的社区痴呆症患者的需求和经历知之甚少。后皮质萎缩(PCA)是一种罕见的痴呆症,通常由阿尔茨海默氏症引起,但其特点是视觉处理能力减弱(而不是主要的记忆问题),这给保持独立性和获得适当的支持带来了挑战。方法本研究采用比较定性设计和重点人种学方法,探讨 10 名最常见的、以记忆为主要表现形式的阿尔茨海默病患者和 10 名后皮质萎缩患者在日常家居环境中参与活动的体验差异。其中包括后皮质萎缩患者不太可能利用环境线索来启动活动,也更有可能拒绝寻求支持,因为他们不了解这样做对照顾者的影响。这种缺乏主动活动的情况可能会被误解为冷漠。后皮质萎缩患者也会因为在家中迷失方向,以及难以定位、识别和操作物品而不愿意参与活动。更常见的、以记忆为主导的阿尔茨海默氏症患者在参与活动时表现出更多基于记忆的困难,例如忘记计划的活动、忘记在哪里找到活动所需的物品以及活动的步骤。尽管存在这些不同的症状挑战,但所有参与者及其家人都表现出了机智和韧性,他们创造性地进行了调整,以支持继续参与日常活动,这与广泛报道的阿尔茨海默型痴呆症患者的管理策略相吻合。结论这些研究结果有助于深入了解与痴呆症相关的视觉和记忆障碍对参与日常活动可能产生的不同影响,这将有助于其他人应对这些挑战,也有助于为受这些疾病影响的患者提供服务的医疗和社会护理从业人员。研究结果还强调了参与日常活动所涉及的众多个人因素和环境因素中存在的巨大个体差异,并提出了未来工作的重要领域,即采用与本文所采用的以家庭为中心的人种学方法同样具有高度生态有效性和可及性的方法。
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引用次数: 0
Carving and making space through dance – Older people using dance to experience their ageing body and challenge ageist discourse 通过舞蹈开辟和创造空间--老年人用舞蹈体验其衰老的身体并挑战年龄歧视的言论
IF 2.3 3区 社会学 Q2 GERONTOLOGY Pub Date : 2024-04-04 DOI: 10.1016/j.jaging.2024.101225
Anna Goulding

Drawing on qualitative data from a study of older adults' participation in a contemporary dance group, this paper asks what can be gained from new materialist concepts of the older body, and how they can expand cultural gerontological thinking about embodiment. This paper examines the connections between the older body, movement, thoughts, words and spaces, arguing that dance demonstrates that there is a spatial dimension to embodiment. In drawing from models of materiality emerging in gerontology, this paper provides insights about the experience of age, questioning fundamental categorizations promoted in Western culture, and re-thinks agency in relation to the body and space. Emphasising the importance of the material world in the production of the social has important implications in terms of understanding the experience of ageing within an ageist society.

本文通过对老年人参与当代舞蹈团体的定性研究数据,提出了从老年身体的新唯物主义概念中可以获得什么,以及这些概念如何拓展老年文化学对体现的思考。本文探讨了老年人的身体、运动、思想、语言和空间之间的联系,认为舞蹈表明了体现的空间维度。通过借鉴老年学中出现的物质性模型,本文提供了关于年龄体验的见解,对西方文化中提倡的基本分类提出了质疑,并重新思考了与身体和空间相关的机构。强调物质世界在社会生产中的重要性,对于理解老龄化社会中的老龄化体验具有重要意义。
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引用次数: 0
Ageism and the digital divide in Switzerland during COVID-19: Lessons for the post-pandemic world COVID-19 期间瑞士的老龄歧视和数字鸿沟:对流行病后世界的启示
IF 2.3 3区 社会学 Q2 GERONTOLOGY Pub Date : 2024-03-30 DOI: 10.1016/j.jaging.2024.101227
Marion Repetti, Elisa Fellay-Favre

The COVID-19 pandemic erupted in early 2020. The Swiss Federal Council implemented a semi-lockdown in March 2020, asking people, particularly older adults, to stay at home to limit the transmission of the disease and to use digital tools to maintain their social relations and activities. This study inquired how older adults confronting precarity experienced these restrictions, how digital tools functioned in this context, and what learning could therefore be imbibed for the post-pandemic era. We conducted semi-structured telephone interviews with adults aged between 66 and 90 years living in a rural and mountainous Swiss region. The obtained data were subsequently thematically analyzed. The results revealed that the respondents experienced ageism during the semi-lockdown and reported limited or non-existent opportunities to use digital tools to maintain online social contact. This predicament increased their sense of loneliness and amplified their feelings of rejection by the outside world. These observations elucidate the need for the enhancement of non-ageist social support for older people, including individuals with limited social and material resources. We advocate the adoption of innovative initiatives in the post-pandemic era to better include precarious older people in our localities and neighborhoods.

COVID-19 大流行于 2020 年初爆发。瑞士联邦委员会于 2020 年 3 月实施了半封锁措施,要求人们,尤其是老年人,待在家里以限制疾病的传播,并使用数字工具来维持他们的社会关系和活动。本研究探究了面临不稳定状况的老年人是如何体验这些限制的,数字工具在这种情况下是如何发挥作用的,以及在后疫情时代可以吸取哪些经验教训。我们对居住在瑞士山区农村的 66 至 90 岁的老年人进行了半结构化电话访谈。我们随后对所获得的数据进行了专题分析。结果显示,受访者在半封闭期间经历了年龄歧视,并表示使用数字工具保持在线社交联系的机会有限或根本不存在。这种困境增加了他们的孤独感,并加剧了他们被外界排斥的感觉。这些观察结果表明,有必要加强对老年人(包括社会和物质资源有限的个人)的非老龄化社会支持。我们主张在后大流行病时代采取创新举措,更好地将岌岌可危的老年人纳入我们的地方和社区。
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引用次数: 0
Dilemmas of intervention: From person-centred to alienation-centred dementia care 干预的困境:从以人为本到以疏离为本的老年痴呆症护理
IF 2.3 3区 社会学 Q2 GERONTOLOGY Pub Date : 2024-03-20 DOI: 10.1016/j.jaging.2024.101224
Annette Leibing , Stephen Katz

Discussions regarding personhood and dementia care are often based on practices of recognition; on notions of being—or not being— ‘one of us’. This article provides a short overview of personhood as articulated in dementia care, especially in the assemblage of practices known as ‘person-centred care’ (PCC), and in post-human approaches that developed following the critique of PCC. This article posits an alternative framework, based on a rereading of the concept of alienation, that we want to call ‘alienation-centred care’. It considers the extent to which dynamic prosthetic networks can be adapted to the lives of people with dementia, rather than only examining the individual's reactivity to dementia interventions that define traditional approaches. It further urges us to understand the multiple origins of alienating states. Conclusions explore how this framework might address some of the limitations identified in both humanist and post-human approaches to personhood and dementia.

关于人格和痴呆症照护的讨论往往基于认可的实践;基于是或不是 "我们中的一员 "的概念。本文简要概述了痴呆症护理中的人格问题,尤其是在被称为 "以人为本的护理"(PCC)的实践组合中,以及在对 "以人为本的护理 "进行批判后发展起来的后人类护理方法中。本文基于对 "异化 "概念的重新解读,提出了另一种框架,我们称之为 "以异化为中心的护理"。它考虑了动态义肢网络能够在多大程度上适应痴呆症患者的生活,而不是仅仅研究个人对痴呆症干预措施的反应,这也是传统方法的定义。它进一步敦促我们了解疏离状态的多重起源。结论探讨了这一框架如何能够解决人本主义和后人本方法在人格和痴呆症方面所发现的一些局限性。
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引用次数: 0
Hattie and Sammler: Saul Bellow's older woman and older man 哈蒂和萨姆勒索尔-贝娄笔下的老年妇女和老年男子
IF 2.3 3区 社会学 Q2 GERONTOLOGY Pub Date : 2024-03-13 DOI: 10.1016/j.jaging.2024.101217
Xiaoming Cong

Hattie in Saul Bellow's “Leaving the Yellow House” and Sammler in Bellow's Mr. Sammler's Planet are both elderly characters. This article intends to compare the two characters from a gender perspective, to illustrate how these characters appear to experience and respond to old age and how other characters in these two fictions respond to the old age of their respective elderly characters. The comparison of these two characters in the fiction of Saul Bellow gives rise to the observation that old age is not merely a phase of negative changes but also of positive ones; ageism claims victims among both men and women whose suffering is aggravated by other kinds of injustice, such as racism and sexism.

索尔-贝娄《离开黄房子》中的哈蒂和贝娄《山姆勒先生的星球》中的山姆勒都是老年人物。本文拟从性别视角对这两个人物进行比较,说明这两个人物似乎是如何体验和应对老年的,以及这两部小说中的其他人物是如何应对各自老年人物的老年生活的。通过对索尔-贝娄小说中这两个人物的比较,我们可以发现,老年不仅是一个消极变化的阶段,也是一个积极变化的阶段;老年主义在男性和女性中都有受害者,他们的痛苦因种族主义和性别歧视等其他类型的不公正而加剧。
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引用次数: 0
“They didn't think we'd do it!”: Community gardening as an act of resistance for people with dementia "他们没想到我们会这么做!":社区园艺是痴呆症患者的一种反抗行为
IF 2.3 3区 社会学 Q2 GERONTOLOGY Pub Date : 2024-03-01 DOI: 10.1016/j.jaging.2024.101216
Sarah Swift , Nicholas Jenkins , Margaret Brown , Marjorie McCrory

People living with dementia commonly report negative experiences such as disempowerment, stigma, and oppression. Community gardening has demonstrated its potential as a forum for the practice of resistance against the oppressions experienced by other marginalised groups; however, this element of the experience of community gardening has yet to be explored in the context of dementia. A collaboratively-designed community gardening project took place over six weeks, involving six people with dementia. The participants selected all activities undertaken in the garden. Data were collected through semi-structured group interviews with the gardeners and researcher observations. Context-setting semi-structured individual interviews were conducted with four day centre staff members, and three key informants who had experienced working with people with dementia in the garden. The garden acted as a platform for the articulation of both verbal and embodied expressions of resistance against the disempowerment and loss of agency experienced by many people with dementia. The participatory design of the gardening sessions enabled the gardeners to assert their autonomy and independence, and defy the negative stereotypes associated with dementia, which some of the group members appeared to have internalised. Community gardening activities may offer a forum for expressions of resistance against the structures oppressing individuals with dementia. However, in order for this potential to be unlocked, such initiatives must be collaboratively designed, following an approach which recognises the strengths and enduring abilities of people living with dementia. Additionally, the empowering impact of community gardening should not be diluted by positioning the activity as a substitute for adequate statutory health and social care provision, thereby individualising responsibility for the wellbeing of people with dementia.

痴呆症患者通常会有一些负面的经历,如丧失权能、耻辱感和压迫感。社区园艺已经证明了其作为抵制其他边缘化群体所经历的压迫的实践场所的潜力;然而,在痴呆症的背景下,社区园艺体验的这一要素还有待于探索。一个合作设计的社区园艺项目历时六周,有六名痴呆症患者参与。园艺项目的所有活动都由参与者自己选择。通过对园丁进行半结构化小组访谈和研究人员的观察收集数据。对四名日间中心工作人员和三名曾在花园中与痴呆症患者共事的关键信息提供者进行了设定情境的半结构化个人访谈。花园作为一个平台,为许多痴呆症患者提供了语言和行为表达方式,以反抗他们所经历的权能被剥夺和代理权丧失。园艺活动的参与性设计使园艺家们能够坚持自己的自主性和独立性,并蔑视与痴呆症相关的负面刻板印象,而一些小组成员似乎已经将这些刻板印象内化了。社区园艺活动可以为表达对压迫痴呆症患者的结构的反抗提供一个平台。然而,为了释放这种潜能,必须合作设计此类活动,并采用一种承认痴呆症患者的长处和持久能力的方法。此外,不应将社区园艺活动定位为替代适当的法定医疗和社会护理服务,从而淡化其对痴呆症患者福祉的个人责任。
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引用次数: 0
Adapting to home care in Norway: A longitudinal case study of older Adults' experiences 在挪威适应家庭护理:对老年人经历的纵向个案研究
IF 2.3 3区 社会学 Q2 GERONTOLOGY Pub Date : 2024-02-17 DOI: 10.1016/j.jaging.2024.101215
Ove Hellzén , Tove Mentsen Ness , Kari Ingstad , Mette Spliid Ludvigsen , Ann Marie Nissen , Siri Andreassen Devik

This study aimed to describe how older adults with complex health problems manage their everyday lives in their own homes and how they interact with given home care. In this multiple-case study, a total of 14 individual interviews were conducted with five older adults over the course of one year. Deductive and inductive content analyses were performed. Three descriptive categories were each identified in the deductive (‘home care as interpersonal continuity’, ‘home care as information continuity’ and ‘home care as management continuity’) and inductive analyses (‘Lack of social contact with carers’, ‘Desire to be heard throughout the care process’ and ‘Carers are short on time’). Quality home care services are difficult to realize if interpersonal interaction is subordinated to effective task-solving.

本研究旨在描述有复杂健康问题的老年人如何在自己家中料理日常生活,以及他们如何与家庭护理互动。在这项多案例研究中,我们对五位老年人进行了 14 次单独访谈,历时一年。对访谈内容进行了演绎和归纳分析。在演绎分析("作为人际连续性的家庭护理"、"作为信息连续性的家庭护理 "和 "作为管理连续性的家庭护理")和归纳分析("缺乏与护理人员的社会接触"、"希望在整个护理过程中被倾听 "和 "护理人员时间不够")中,分别确定了三个描述性类别。如果人际互动从属于有效的任务解决,那么优质的家庭护理服务就很难实现。
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引用次数: 0
Ambiguous personhood: Paradoxes of social belonging in Danish nursing home care 模糊的人格:丹麦养老院护理中的社会归属悖论
IF 2.3 3区 社会学 Q2 GERONTOLOGY Pub Date : 2024-02-09 DOI: 10.1016/j.jaging.2024.101214
Emma Jelstrup Balkin , Ingjerd Gåre Kymre , Mette Geil Kollerup , Bente Martinsen , Mette Grønkjær

In oldest old age (generally considered to be from 85 years onwards), personhood is often called into question, impacting well-being as a result. Based on ethnographic fieldwork, this article examines the well-being of oldest old nursing home residents at the intersections of ageism, fraying personhood and fragile social belonging in Danish nursing home care. In Denmark personhood hinges on both independence and social belonging; or “fællesskab.” We examine how these concepts are practiced in nursing home care. Taking its starting point in the distinction between the “inside world” of the nursing home and the “real world” outside, the article examines how processes of othering occur in nursing home care, imperilling resident personhood and opportunities for social belonging. We consider how oldest old residents navigate social belonging, finding it in turn life-sustaining and vexatious. We argue that tacit ageism permeates the nursing home, to the detriment of resident well-being, despite the best intentions of an aged care system that is structured to specifically maintain personhood.

在耄耋之年(一般认为是 85 岁以上),人格常常受到质疑,从而影响到幸福感。本文以人种学实地调查为基础,从丹麦养老院护理中的年龄歧视、脆弱的人格和脆弱的社会归属感这三个交叉点出发,探讨了养老院高龄老人的幸福感问题。在丹麦,人格取决于独立性和社会归属感(或称 "fællesskab")。我们将研究这些概念在养老院护理中是如何实践的。文章以养老院 "内部世界 "和外部 "真实世界 "之间的区别为出发点,探讨了他者化过程如何在养老院护理中发生,从而危及居民的人格和社会归属机会。我们探讨了最年长的住院者如何驾驭社会归属感,发现它既能维持生命,又令人烦恼。我们认为,尽管养老护理系统的结构设计是为了专门维护老年人的人格,但养老院中弥漫着不言而喻的老龄歧视,损害了居民的福祉。
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引用次数: 0
Care-ethical considerations of technology-care-assemblages 技术--护理--组合的护理--伦理考量
IF 2.3 3区 社会学 Q2 GERONTOLOGY Pub Date : 2024-02-07 DOI: 10.1016/j.jaging.2024.101209
Cordula Endter , Silke Migala , Anne Münch , Anna Richter

Technology plays a major role in care. Against the background of demographic ageing, the use of assistive technologies to support and relieve carers in their work is becoming more and more important. One sector that is increasingly coming into focus is home care by family caregivers. Here, the use of assistive technologies takes place under specific conditions. The article proposes a care-ethical perspective to understand these conditions. It critically discusses issues of power and participation in the negotiation of care that can be associated with the use of technology and outlines a care-ethical perspective on technocare.

技术在护理工作中发挥着重要作用。在人口老龄化的背景下,使用辅助技术来支持和减轻护理人员的工作变得越来越重要。家庭护理人员的家庭护理就是一个日益受到关注的领域。在这里,辅助技术的使用是在特定条件下进行的。本文提出了一种护理伦理视角来理解这些条件。文章批判性地讨论了与技术使用相关的护理谈判中的权力和参与问题,并概述了技术护理的护理伦理视角。
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引用次数: 0
Images of care: A pedagogy of rosiness about aging transitions 关爱的形象:关于老龄化过渡的玫瑰教育学
IF 2.3 3区 社会学 Q2 GERONTOLOGY Pub Date : 2024-02-07 DOI: 10.1016/j.jaging.2024.101213
Cati Coe , Sheridan Conty

How do people learn about what it is like to become frail and require assistance with activities of daily living? This significant transition in the life course is often avoided and denied by those in North America. This paper examines images from the websites of agencies providing care to older adults in their homes as one aspect of a wider social pedagogy about aging. In particular, we find that agencies in Canada and the United States aim to attract potential clients with rosy and positive images of aging, using stock images that showcase active and healthy seniors. They do not present their core services of toileting, bathing, and lifting directly, but rather represent care indirectly through the touch and attention of caregivers towards an older adult. As a result, home care agencies reproduce dominant images of successful aging, in which frailty and the need for care are taboo.

人们如何了解身体变得虚弱并在日常生活中需要帮助的情况?北美的人们常常回避和否认生命历程中的这一重要转变。本文研究了为居家老年人提供护理的机构网站上的图片,将其作为更广泛的老龄化社会教学法的一个方面。特别是,我们发现加拿大和美国的机构使用展示活跃和健康老年人的图片库,旨在以美好和积极的老龄化形象吸引潜在客户。他们并不直接展示如厕、洗澡和搬运等核心服务,而是通过护理人员对老年人的触摸和关注来间接体现护理服务。因此,居家护理机构再现了成功老龄化的主流形象,其中虚弱和需要护理是禁忌。
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引用次数: 0
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Journal of Aging Studies
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