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In Darkness We Meet: Annie Ernaux's Account of Care and Dementia. 在黑暗中我们相遇:安妮-厄尔诺的护理与痴呆症记事》(In Darkness We Meet: Annie Ernaux's Account of Care and Dementia)。
IF 4.6 2区 医学 Q1 GERONTOLOGY Pub Date : 2024-06-01 DOI: 10.1093/geront/gnad175
Ieva Stončikaitė, Óscar Ortega Montero

Background and objectives: The complexities surrounding aging, dementia, and care are timely issues that transcend beyond institutional boundaries, evincing a critical debate on later life across disciplines. The aim of this study is to offer fresh insights into the intricate paradigms of living and growing older with dementia. The study focuses on the Nobel Prize-winning author Annie Ernaux's memoir I Remain in Darkness (1999), which provides a candid account of her mother's journey through dementia from its onset to the gradual decline.

Research design and methods: This article employs the theoretical frameworks of literary gerontology, illness narratives and life writing to address the challenges of aging, dementia and care that are represented in Ernaux's memoir. It also addresses societal attitudes and stigma associated with aging and dementia by exploring the embarrassment that individuals and families experience when confronted with the deteriorating mental health of their loved ones.

Results: Ernaux's memoir explores the nuances of dementia and caregiving within both the familial and institutional context, and sheds light on the complex relationship between a mother and a daughter. Through the act of witnessing, Ernaux embarks on a path of healing, which allows her to confront her past wounds and better navigate the challenges that lie ahead. However, Ernaux's confessional memoir also troubles the ethics of life writing and identity issues, and seems to perpetuate the pathologizing medical gaze through the exposure of her mother's vulnerability and intimacy in the face of dementia and care.

Discussion and implications: Ernaux's account of her mother's dementia and aging is both a confessional piece of writing and a narrative therapy, which reveals the challenges of aging, illness, and unresolved family tensions. Her work illuminates the interconnectedness between the past, present, and future, and shows that illness narratives can act as a catalyst for transformative change, identity formation, and self-reflection. The article addresses the intricacies of old age, showcasing how life writing and humanities-based inquiry can bring to the fore key aspects of the latest stages in life, which are often unvoiced because they represent the most unpleasant and feared aspects of aging in contemporary society.

围绕老龄化、痴呆症和护理问题的复杂性是一个及时而紧迫的问题,它超越了机构的界限,体现了一场关于晚年生活的跨学科批判性辩论。近几十年来,有关痴呆症的文学和文化表述以及护理叙事显著增加,这些叙事为人们了解痴呆症患者错综复杂的生活和变老模式提供了宝贵的见解。诺贝尔文学奖得主安妮-埃尔诺(Annie Ernaux)在她的回忆录《我仍在黑暗中》(1999 年)中,坦诚地讲述了她母亲从开始患痴呆症到逐渐衰退的过程。埃尔诺真诚地探讨了痴呆症的细微差别以及在家庭和机构背景下的护理问题,并揭示了母亲和女儿之间复杂而不安的关系。通过见证,她走上了一条治愈之路,这让她能够直面过去的创伤,更好地应对未来的挑战。埃尔诺对母亲痴呆症和衰老的描述令人心碎,既是一部忏悔录,也是一种叙事疗法,揭示了衰老、疾病和未解决的家庭矛盾所带来的挑战。她的作品揭示了过去、现在和未来之间的相互联系,并表明疾病叙事可以成为变革、身份形成和自我反思的催化剂。然而,埃尔诺的忏悔回忆录也对生命写作的伦理和身份问题提出了质疑,并且通过揭露其母亲在面对痴呆症和护理时的脆弱性和亲密关系,似乎延续了病理化的医学目光。
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引用次数: 0
Caregiving While Black: A Novel, Online Culturally Tailored Psychoeducation Course for Black Dementia Caregivers. 黑人护理:为黑人痴呆症护理人员量身定制的新颖在线文化心理教育课程。
IF 4.6 2区 医学 Q1 GERONTOLOGY Pub Date : 2024-06-01 DOI: 10.1093/geront/gnae009
Karah Alexander, Nkosi Cave, Sloan Oliver, Stephanie Bennett, Melinda Higgins, Ken Hepburn, Carolyn Clevenger, Fayron Epps

Background and objectives: Psychoeducation interventions using distance learning modalities to engage caregivers in active learning environments have demonstrated benefits in enhancing caregiving mastery. However, few of these programs have been specifically adapted to develop mastery in Black caregivers.

Research design and methods: A multimethod approach was carried out to assess Caregiving While Black (CWB), including pre-post surveys and in-depth interviews. This psychoeducation course addresses the cultural realities of caring for a person living with dementia as a Black American. Caregivers engaged in online asynchronous education related to healthcare navigation, home life management, and self-care. Primary (caregiving mastery) and secondary outcomes (anxiety, depression, perceived stress, burden, perceived ability to manage behavioral and psychological symptoms) were assessed at baseline and post-course (10 weeks).

Results: Thirty-two Black caregivers from across the United States completed the course within the allotted time frame. Paired sample t test analyses revealed significant reductions in caregiver burden and role strain. Caregiver mastery from baseline to completion increased by 0.45 points with an effect size of 0.26 (Cohen's d). Twenty-nine caregivers participated in an optional post-course interview, and thematic analysis led to the construction of 5 overarching themes: Comfortability with a Culturally Tailored Course; Experiences Navigating the Course Platform; Utility of Course Resources; Time as a Barrier and Facilitator; Familial and Community Engagement.

Discussion and implications: Pilot findings convey a need to continue creating and receiving feedback on culturally tailored psychoeducation programs for dementia caregivers. The next steps include applying results to fuel the success of the next iteration of CWB.

背景和目的:利用远程学习模式让护理人员参与到积极的学习环境中的心理教育干预措施已证明对提高护理人员的掌握能力大有裨益。然而,这些计划中很少有专门针对黑人护理人员的掌握能力进行调整的:我们采用了多种方法来评估黑人护理(CWB),包括事后调查和深入访谈。这门心理教育课程针对的是美国黑人照顾痴呆症患者的文化现实。护理人员参与了与医疗保健导航、家庭生活管理和自我护理相关的在线异步教育。在基线和课程结束后(10 周)对主要结果(护理掌握程度)和次要结果(焦虑、抑郁、感知压力、负担、感知管理行为和心理症状的能力)进行评估:来自美国各地的 32 名黑人护理人员在规定时间内完成了课程。配对样本 t 检验分析表明,照顾者的负担和角色压力明显减轻。从基线到完成课程,护理人员的掌握程度提高了 0.45 分,效应大小为 0.26(Cohen's d)。29 名护理人员参加了可选的课后访谈,通过主题分析,形成了 5 大主题:对文化定制课程的舒适度;浏览课程平台的体验;课程资源的实用性;时间作为障碍和促进因素;家庭和社区参与:试点研究结果表明,有必要继续为痴呆症照护者创建符合其文化背景的心理教育课程并接受反馈。接下来的步骤包括应用试验结果来推动下一轮 CWB 的成功。
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引用次数: 0
Implementation of an Advance Care Planning Intervention in Nursing Homes: An International Multiple Case Study. 在养老院实施预先护理计划干预:国际多案例研究。
IF 4.6 2区 医学 Q1 GERONTOLOGY Pub Date : 2024-06-01 DOI: 10.1093/geront/gnae007
Kevin Brazil, Catherine Walshe, Julie Doherty, Andrew J E Harding, Nancy Preston, Laura Bavelaar, Nicola Cornally, Paola Di Giulio, Silvia Gonella, Irene Hartigan, Catherine Henderson, Sharon Kaasalainen, Martin Loucka, Tamara Sussman, Karolina Vlckova, Jenny T van der Steen

Background and objectives: The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention has been designed to inform family carers about end-of-life care options available to a person living with advanced dementia. The objectives of the mySupport study were to adapt the application of the intervention for use in different countries, assess impact on family satisfaction and decision-making, and identify costs and supportive conditions for the implementation of the intervention.

Research design and methods: A multiple-case study design was chosen where the nursing home was the case. Nursing homes were enrolled from six countries: Canada, Czech Republic, Italy, Netherlands, Republic of Ireland, and United Kingdom.

Results: Seventeen cases (nursing homes) participated, with a total of 296 interviews completed including family carers, nursing home staff, and health providers. Five themes relevant to the implementation of the intervention were identified: supportive relationships; committed staff; perceived value of the intervention; the influence of external factors on the nursing home; and resource impact of delivery.

Discussion and implications: There is a commonality of facilitators and barriers across countries when introducing practice innovation. A key learning point was the importance of implementation being accompanied by committed and supported nursing home leadership. The nursing home context is dynamic and multiple factors influence implementation at different points of time.

背景和目的:痴呆症晚期患者无法就临终关怀的偏好进行交流,这给医护人员和家庭照护者带来了挑战。经证实有效的 "家庭照护者决策支持 "干预措施旨在让家庭照护者了解晚期痴呆症患者可选择的临终照护方案。mySupport研究的目标是调整干预措施在不同国家的应用,评估其对家庭满意度和决策的影响,并确定实施干预措施的成本和支持条件:研究设计和方法:采用多重案例研究设计,以养老院为案例。六个国家的养老院参与了研究:加拿大、捷克共和国、意大利、荷兰、爱尔兰共和国和英国:结果:17 个案例(养老院)参与了研究,共完成了 296 次访谈,访谈对象包括家庭护理人员、养老院员工和医疗服务提供者。确定了与实施干预措施相关的五个主题:支持性关系;尽职尽责的员工;对干预措施价值的认知;外部因素对养老院的影响;以及实施干预措施对资源的影响:讨论和启示:在引入实践创新时,各国的促进因素和障碍具有共性。一个关键的学习点是,在实施过程中,养老院领导层必须坚定不移,并给予支持。疗养院的环境是动态的,多种因素会在不同的时间点影响实施。
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引用次数: 0
"When somebody says this is a program for adults, it kind of smacks of pornography": Older Adults' Opinions on Age Labels in the Public Library. "当有人说这是给成年人看的节目时,就有点色情的味道":老年人对公共图书馆中年龄标签的看法。
IF 4.6 2区 医学 Q1 GERONTOLOGY Pub Date : 2024-06-01 DOI: 10.1093/geront/gnae011
Nicole K Dalmer, Amanda Bull, Bria Mitrovica

Background and objectives: Chronological age is invariably used as a categorizing tool for spaces, collections, and programs in public libraries. With age-based conceptions of human experience in library practice, education, and scholarship primarily focused on those under the age 18, little is known how age-based classifications are implemented in public libraries, and with what impacts, for older library patrons.

Research design and methods: Stemming from a larger project that seeks to bring attention to the ways in which public libraries engage with community-dwelling older adults, this paper explores 51 older patrons' perspectives on the numbers and language (e.g., 55+, older adult, seniors, adult) assigned to older adults in library programs and which label best (or least) suits their sense of identity and, in turn, what language encourages or deters their engagement with library programs.

Results: Findings illustrate that age-based language describing older adult library programs is often at odds with patrons' perceptions of how library programming relevant to them ought to be labeled. Common to all participants was a clear dislike for the term "elderly." While most participants preferred "older adult" to "senior," others voiced no preference, as long as they felt heard and valued. Many participants linked the use of language used to describe library programs to being excluded from and treated differently from other (younger) library patrons.

Discussion and implications: The language used to group and describe different library populations directly shapes feelings of belonging (or exclusion) in library programs. Insights from this research contribute to our evolving understandings of the ways in which language connected to age can shape one's sense of identity. Results also serve to cultivate a more sensitive and critical approach to the question of age within library science, and, by extension, the experiences of older adults who frequent the library.

在公共图书馆中,按时间顺序排列的年龄总是被用作空间、馆藏和项目的分类工具。本文是一个大型项目的一部分,旨在关注公共图书馆与居住在社区的老年人接触的方式。本文探讨了老年读者对图书馆项目中为老年人指定的语言(如老年人、老年人、成年人)的看法,以及哪个标签最适合(或最不适合)他们的身份感,反过来,哪些语言鼓励或阻碍他们参与图书馆项目。研究结果表明,描述老年人图书馆项目的基于年龄的语言往往与读者对图书馆项目应如何贴上与他们相关的标签的看法相左。所有参与者的共同点是明显不喜欢 "老年人 "一词。虽然大多数参与者更喜欢 "老年人 "而不是 "老年 人",但也有一些人表示没有偏好,只要他们觉得自己的声音被倾听、被重视就好。许多参与者将描述图书馆项目的语言的使用与被其他图书馆读者排斥和区别对待联系起来。因此,用来归类和描述不同图书馆人群的语言直接影响了人们对图书馆项目的归属感(或排斥感)。这项研究的洞察力有助于我们进一步理解与年龄相关的语言是如何塑造一个人的身份认同感的。研究结果还有助于在图书馆学中培养一种对年龄问题更加敏感和更具批判性的方法,并由此延伸到经常光顾图书馆的老年人的经历。
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引用次数: 0
On the Role of Personality in Successful Aging: A Scoping Review. 人格在成功老龄化中的作用:范围综述。
IF 4.6 2区 医学 Q1 GERONTOLOGY Pub Date : 2024-06-01 DOI: 10.1093/geront/gnae005
Rodrigo Serrat, Valentina Cannella, Karima Chacur-Kiss, Joan Pons-Vila, Clemens Tesch-Römer

Background and objectives: This study aimed to critically examine current knowledge on the role of personality in successful aging, considering Hooker and McAdams' 3-level, 6-foci model of personality. The aim was also to pinpoint knowledge gaps that research should address in the future.

Research design and methods: We carried out a scoping review of the literature on successful aging and personality, following the 5-step framework proposed by Arksey and O'Malley and further expanded by Levac et al.

Results: Research into the role of personality in successful aging has grown significantly over the last 20 years. However, the increasing number of publications on the topic was primarily accounted for by studies focused on Layer 1 and particularly Layer 2 of McAdams' model of personality, with Layer 3 being scarcely addressed. Research that included more than 1 layer of personality was rare.

Discussion and implications: Our study pinpointed gaps that should be considered in future research in this area. These gaps were related to advancing toward agreed-upon definitions of successful aging and personality, broadening the scope of research on this topic, and integrating personality dimensions on research on successful aging.

背景和目的:本研究旨在结合麦克亚当斯(Hooker & McAdams, 2003; McAdams, 2015)的三层次六焦点人格模型,批判性地审视当前关于人格在成功老龄化中的作用的知识。研究设计与方法:我们按照 Arksey 和 O'Malley(2005 年)提出、并由 Levac 等人(2010 年)进一步扩展的五步框架,对有关成功老龄化和人格的文献进行了范围界定:结果:在过去 20 年里,有关人格在成功老龄化中的作用的研究有了显著增长。然而,有关这一主题的论文数量不断增加,主要是针对麦克亚当斯人格模型第一层,特别是第二层的研究,而第三层的研究则很少。包括一个以上人格层的研究也很少见:我们的研究指出了该领域未来研究应考虑的不足之处。这些不足之处涉及到对成功老龄化和人格的定义达成共识、扩大该主题的研究范围以及将人格维度纳入成功老龄化研究。
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引用次数: 0
"Yes, that's me singing to myself": Jackie Kay's "These are not my clothes" as a Self-Affirming Narrative of Care in Old Age. 是的,那是我在对自己唱歌":杰基-凯的 "这些不是我的衣服 "是对老年护理的自我肯定。
IF 4.6 2区 医学 Q1 GERONTOLOGY Pub Date : 2024-06-01 DOI: 10.1093/geront/gnae022
Maricel Oró-Piqueras, Núria Casado-Gual, Verónica Vizcaíno

Fictional stories set in care homes have increased in the last decades and, with them, the perspectives from which care homes are constructed and represented have become diversified. Care home stories. Aging, disability, and long-term residential care. Transcript Verlag]. Through the alternative worlds that are offered by literary narratives, these stories allow the reader to glimpse into the increasingly varied possibilities of care that a residential settlement can offer. At the same time, they highlight the attributes attached to human beings once their bodies are not regarded as fully functional or able by their carers and society at large. Jackie Kay's short story "These are not my clothes" (2011) presents a highly symbolic care-home narrative in which constant practices of depersonalized care and infantilization lead to the inevitable dehumanization of the residents and their eventual deterioration. Through the viewpoint of its female protagonist, Margaret, Kay creates a personal, poignant and, at times, also humorous narrative of care that undermines prevailing images of the so-called fourth age as a period of extreme cognitive deterioration. Drawing from theories of care and the interdisciplinary field of aging studies, especially in connection with theories of embodiment and old age and social approaches to aging, this article offers a close reading of Kay's short story as both an assertive narrative on the fourth age, and as an insubordinate story of care, which can serve as a model to both gerontologists and care practitioners.

过去几十年来,以护理院为背景的虚构故事越来越多,构建和重新呈现护理院的视角也随之变得多样化(Chivers 和 Kriebernegg,2017 年)。通过文学叙事提供的另类世界,这些故事让读者得以一窥养老院所能提供的日益多样化的护理可能性。与此同时,这些故事还强调了当人的身体不被照顾者和整个社会视为具有完全的功能或能力时,人所具有的属性。杰基-凯(Jackie Kay)的短篇小说《这不是我的衣服》(2011 年)展现了一个极具象征意义的疗养院叙事,在这个故事中,持续不断的非人格化护理和婴儿化做法不可避免地导致了住户的非人化和最终的恶化。通过女主角玛格丽特的视角,凯创作了一个个人化的、凄美的,有时也是幽默的护理叙事,破坏了所谓的第四个年龄段是认知能力极度退化时期的普遍印象。本文借鉴了护理理论和老龄化研究的跨学科领域,特别是与体现和老年理论以及老龄化的社会方法相关的理论,对凯的短篇小说进行了细读,认为它既是对第四个年龄段的自信叙述,也是一个不服从的护理故事,可以作为老年学专家和护理从业人员的范本。
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引用次数: 0
"Nobody But a Family Member Can Do It Quite the Same Way": Understanding the Meaning of Mealtimes to Residents and Families in Long-Term Care Homes During the Pandemic. "除了家人,没人能以同样的方式用餐":了解大流行病期间用餐时间对长期护理院居民和家人的意义。
IF 4.6 2区 医学 Q1 GERONTOLOGY Pub Date : 2024-06-01 DOI: 10.1093/geront/gnad168
Heather H Keller, Sarah A Wu, Allison Cammer, Christina Lengyel, Ruth Harvie, Hannah M O'Rourke, Hana Dakkak, Vanessa Trinca, Natalie Carrier, Susan E Slaughter

Background and objectives: Meals in long-term care (LTC) are essential to residents not only for nutrition and their physical well-being but also for their social interactions supporting resident quality of life. This study aims to understand the mealtime experiences of residents and family care partners during the coronavirus 2019 disease (COVID-19) pandemic when restrictions were put in place in LTC and retirement homes.

Research design and methods: Interpretive description analysis of qualitative interviews in LTC and retirement homes, with 17 family care partners and 4 residents. Convenience and snowball sampling was used to recruit participants for telephone interviews.

Results: Three themes were generated. Compromised mealtimes mean compromising community-meals were seen by participants as a key social and community-building event of the home; they reported this loss of community with pandemic restrictions. Participants noted that family care partners are indispensable at meals for social, psychological, and physical support. The dangers of eating alone spoke to the social isolation reported by participants that occurred during the pandemic and the risks they described of eating alone.

Discussion and implications: This study confirms the importance of mealtimes in LTC and retirement homes to community building and extends our understanding of the importance of family inclusion at meals and why eating alone, as happened during COVID-19, was so detrimental to residents. Effort needs to be made to value this communal activity for the well-being of residents.

背景和目标:长期护理机构(LTC)中的膳食对住院者来说至关重要,这不仅关系到他们的营养和身体健康,还关系到他们的社交互动,有助于提高住院者的生活质量。本研究旨在了解在 COVID-19 大流行期间,居民和家庭护理伙伴在长期护理中心和养老院实施限制措施时的用餐体验:研究设计和方法:对长者护理中心和养老院的定性访谈进行解释性描述分析,访谈对象包括 17 位家庭护理伙伴和 4 位住院者。采用便利和滚雪球抽样法招募电话访谈参与者:结果:产生了三个主题。用餐时间受到影响意味着社区受到影响--参与者认为,用餐是养老院的一项重要社交和社区建设活动;他们报告说,由于大流行病的限制,社区受到了影响。与会者指出,在进餐时,家庭护理伙伴在社交、心理和身体方面的支持是不可或缺的。独自进餐的危险反映了大流行期间参与者所报告的社会隔离以及他们所描述的独自进餐的风险:这项研究证实了长者护理中心和养老院的用餐时间对社区建设的重要性,并扩展了我们对家庭融入用餐的重要性以及为什么在 COVID-19 期间发生的独自用餐对居民如此不利的理解。为了住户的福祉,我们需要努力重视这种社区活动。
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引用次数: 0
Nurturing Attentiveness: A Naturalistic Observation Study of Personal Care Interactions Between People With Advanced Dementia and Their Caregivers. 关爱:一项关于晚期痴呆症患者与其护理人员之间个人护理互动的自然观察研究。
IF 4.6 2区 医学 Q1 GERONTOLOGY Pub Date : 2024-06-01 DOI: 10.1093/geront/gnae004
Tamara Backhouse, Yun-Hee Jeon, Anne Killett, Jessica Green, Mizanur Khondoker, Eneida Mioshi

Background and objectives: Personal care interactions can provide vital opportunities for caregivers to engage with a person living with advanced dementia. However, interactions may also be a contentious experience, what makes this so is not fully understood. We aimed to examine features of personal care interactions between caregivers and people with advanced dementia to understand how care may be improved.

Research design and methods: This was a naturalistic observation study using one-off video-recorded observations of personal care interactions between 14 people with advanced dementia and 12 caregivers (n = 7 care-home staff, n = 5 family carers) in the United Kingdom (total observation time 03:01:52). Observations were analyzed with observational video coding to determine the frequency of actions of people with dementia and qualitative content analysis for in-depth examination.

Results: Refusals of care were present in 32% of video sections. Active engagement of people with dementia was observed in 66% of sections. Rare contentious interactional components were characterized by the person with dementia appearing to show uneasiness and caregivers being flustered and uncertain. However, caregivers typically emanated a nurturing attentiveness, were attuned to the person, and skilled in seamlessly supporting them through care activities.

Discussion and implications: Findings draw on real-world empirical evidence to reinvigorate the notion of person-centeredness in dementia care. The findings provide much needed insight into practical ways to improve care interactions for people with advanced dementia and enhance their personhood. Appropriate training/guidance for caregivers could support positive personal care experiences for both the person with dementia and caregiver.

背景和目的:个人护理互动可为护理人员提供与晚期痴呆症患者接触的重要机会。然而,互动也可能是一种有争议的经历,而造成这种情况的原因尚未完全明了。我们旨在研究照护者与晚期痴呆症患者之间个人照护互动的特点,以了解如何改善照护:这是一项自然观察研究,我们对英国 14 名晚期痴呆症患者和 12 名护理人员(7 名护理院工作人员,5 名家庭护理人员)之间的个人护理互动进行了一次性视频录像观察(总观察时间为 03:01:52)。观察结果通过观察视频编码进行分析,以确定痴呆症患者的行动频率,并通过定性内容分析进行深入研究:结果:32%的视频中存在拒绝护理的情况。在 66% 的视频中可以观察到痴呆症患者的积极参与。罕见的有争议的互动部分表现为痴呆症患者表现出不安,而护理人员则显得慌乱和不确定。然而,护理人员通常会散发出一种关爱,与痴呆症患者保持一致,并熟练地在护理活动中为他们提供无缝支持:研究结果借鉴了现实世界的经验证据,为痴呆症护理中的 "以人为本 "理念注入了新的活力。研究结果为改善晚期痴呆症患者的护理互动和提高他们的人格提供了亟需的实用方法。对护理人员进行适当的培训/指导,可以为痴呆症患者和护理人员提供积极的个人护理体验。
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引用次数: 0
The Mediating Role of Proxy Respondents on the Relationship Between Cognitive Function and Self-Rated Health. 代理受访者对认知功能与自评健康之间关系的中介作用。
IF 4.6 2区 医学 Q1 GERONTOLOGY Pub Date : 2024-06-01 DOI: 10.1093/geront/gnad163
Andrew G Alberth, Edward Alan Miller, Nina M Silverstein, Jeffrey Stokes, Yan-Jhu Su

Background and objectives: Proxy respondents are an important tool in survey research, especially among people with cognitive impairment. However, proxy respondents may be unable to accurately answer subjective survey instruments for cognitively impaired persons. This study investigates the mediating effect of proxy status on the relationship between cognitive impairment and subjectively rated health.

Research design and methods: Respondents from the 2018 wave of the Health and Retirement Study (N = 17,146) were included, and the Baron and Kenny method assessed the potential mediating role of having a proxy on subjectively rated health. Subjectively rated health and proxy status were dichotomously coded, and relationships between cognitive impairment, proxy status, and subjectively rated health were assessed using logistic regression.

Results: Findings indicate that cognitive impairment is inversely associated with subjectively rated health, and it is directly associated with having a proxy. They also indicate that having a proxy is inversely related to subjectively rated health. When including proxy status and cognitive impairment in the same model, cognitive impairment no longer predicted subjectively rated health. This indicates that proxy status perfectly mediated the relationship between cognitive impairment and subjectively rated health.

Discussion and implications: Measuring the experiences of people with cognitive impairment is challenging in survey research due to the limiting features of cognitive impairment. Although having a proxy respondent helps address attrition-related measurement challenges in survey research, findings indicate that proxies report worse subjectively rated health for people with cognitive impairment compared to individuals with comparable levels of cognitive impairment without a proxy. Future research may benefit from exploring optimal proxy-respondent characteristics.

背景和目的:代理受访者是调查研究的重要工具,尤其是在认知障碍人群中。然而,代理受访者可能无法准确回答认知障碍患者的主观调查问卷。本研究调查了代理身份对认知障碍与主观评定健康之间关系的中介效应:研究纳入了2018年健康与退休研究(Health and Retirement Study)的受访者(N=17146),并采用巴伦和肯尼法(Baron and Kenny method)评估了拥有代理人对主观评定健康状况的潜在中介作用。主观评定的健康状况和代理状态被二分编码,认知障碍、代理状态和主观评定的健康状况之间的关系使用逻辑回归进行评估:结果:研究结果表明,认知障碍与主观评定的健康状况成反比,与是否有代理人直接相关。结果:研究结果表明,认知障碍与主观评定的健康状况成反比,并且与是否有代理人直接相关,还表明是否有代理人与主观评定的健康状况成反比。如果将代理状态和认知障碍纳入同一模型,认知障碍不再预测主观评定的健康状况。这表明,代理状态完美地调解了认知障碍与主观健康评分之间的关系:由于认知障碍的局限性,在调查研究中测量认知障碍患者的经历具有挑战性。虽然代理受访者有助于解决调查研究中与自然减员相关的测量难题,但研究结果表明,与认知障碍程度相当但没有代理受访者的个体相比,认知障碍患者的代理受访者报告的主观评定健康状况更差。未来的研究可能会受益于探索最佳的代理受访者特征。
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引用次数: 0
Caregiver Accounts of Lucid Episodes in Persons With Advanced Dementia. 照护者对晚期痴呆症患者清醒发作的描述。
IF 4.6 2区 医学 Q1 GERONTOLOGY Pub Date : 2024-06-01 DOI: 10.1093/geront/gnad170
Jason Karlawish, Andrew Peterson, Melanie Kleid, Kristin Harkins, Emily A Largent, Shana D Stites, Cameron Coykendall, Justin T Clapp

Background and objectives: Paradoxical lucidity is defined as an instance of unexpected lucid behavior in a person who is assumed to be noncommunicative due to a progressive and pathophysiologic dementing process. To inform studies of the prevalence, characteristics, and impact of these behaviors, this interview study examined caregivers' experiences of witnessing paradoxical lucidity.

Research design and methods: Participants were family caregivers of persons living with advanced dementia caused by a neurodegenerative disease producing significant impairments in communication. Semistructured interviews elicited the caregivers' experiences of plausible lucid episodes. Data analysis used a thematic analysis approach.

Results: Most caregivers reported at least 1 episode of lucidity. Episodes were typically brief. Most involved utterances, but nonverbal behaviors were also common. The mental capacities associated with these behaviors included recognition, awareness of surroundings, recognizing others' emotions, and goal-directed behavior. Most caregivers' reactions were positive. Episodes did not lead to changes in major medical decisions but instead to efforts to either modify or reinforce daily caregiving efforts.

Discussion and implications: Episodes of lucidity were common, a finding seen in other studies. If prevalence studies confirm this, the qualifier "paradoxical" should be eliminated. The caregivers' familiarity with the person living with dementia allowed them to attribute meaning to subtle behaviors that might not otherwise be detected or considered lucid. Clinicians who care for persons with advanced-stage dementia should routinely ask caregivers about episodes of lucid communication and their emotional reactions.

背景和目的:反常清醒被定义为由于渐进性病理生理学痴呆过程而被假定为无交流能力的患者出现意外清醒行为的情况。为了给有关这些行为的发生率、特征和影响的研究提供信息,本访谈研究考察了照顾者目睹矛盾性清醒的经历:研究对象是因神经退行性疾病导致沟通能力严重受损的晚期痴呆患者的家庭照顾者。通过半结构式访谈,了解照顾者对似是而非的清醒发作的经历。数据分析采用主题分析法:结果:大多数照顾者都报告了至少一次清醒发作。发作通常很短暂。大多数涉及言语,但非语言行为也很常见。与这些行为相关的心理能力包括识别能力、对周围环境的感知能力、对他人情绪的识别能力以及目标导向行为。大多数照顾者的反应是积极的。发作并没有导致主要医疗决定的改变,而是导致日常护理工作的修改或加强:清醒发作很常见,这在其他研究中也有发现。如果普遍性研究证实了这一点,那么 "自相矛盾 "这一修饰词就不应该出现。护理人员对痴呆症患者的熟悉程度使他们能够对一些微妙的行为赋予意义,否则这些行为可能不会被发现或被认为是清醒的。照护晚期痴呆症患者的临床医生应定期询问照护者有关清醒交流的情况以及他们的情绪反应。
{"title":"Caregiver Accounts of Lucid Episodes in Persons With Advanced Dementia.","authors":"Jason Karlawish, Andrew Peterson, Melanie Kleid, Kristin Harkins, Emily A Largent, Shana D Stites, Cameron Coykendall, Justin T Clapp","doi":"10.1093/geront/gnad170","DOIUrl":"10.1093/geront/gnad170","url":null,"abstract":"<p><strong>Background and objectives: </strong>Paradoxical lucidity is defined as an instance of unexpected lucid behavior in a person who is assumed to be noncommunicative due to a progressive and pathophysiologic dementing process. To inform studies of the prevalence, characteristics, and impact of these behaviors, this interview study examined caregivers' experiences of witnessing paradoxical lucidity.</p><p><strong>Research design and methods: </strong>Participants were family caregivers of persons living with advanced dementia caused by a neurodegenerative disease producing significant impairments in communication. Semistructured interviews elicited the caregivers' experiences of plausible lucid episodes. Data analysis used a thematic analysis approach.</p><p><strong>Results: </strong>Most caregivers reported at least 1 episode of lucidity. Episodes were typically brief. Most involved utterances, but nonverbal behaviors were also common. The mental capacities associated with these behaviors included recognition, awareness of surroundings, recognizing others' emotions, and goal-directed behavior. Most caregivers' reactions were positive. Episodes did not lead to changes in major medical decisions but instead to efforts to either modify or reinforce daily caregiving efforts.</p><p><strong>Discussion and implications: </strong>Episodes of lucidity were common, a finding seen in other studies. If prevalence studies confirm this, the qualifier \"paradoxical\" should be eliminated. The caregivers' familiarity with the person living with dementia allowed them to attribute meaning to subtle behaviors that might not otherwise be detected or considered lucid. Clinicians who care for persons with advanced-stage dementia should routinely ask caregivers about episodes of lucid communication and their emotional reactions.</p>","PeriodicalId":51347,"journal":{"name":"Gerontologist","volume":null,"pages":null},"PeriodicalIF":4.6,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11102005/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138886586","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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