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Cultural adaptations of the WHO iSupport for dementia: A scoping review. 世界卫生组织痴呆症 iSupport 的文化适应性:范围审查。
Pub Date : 2024-10-04 DOI: 10.1177/14713012241283860
Tara P Sani, Gary Cheung, Kathy Peri, Susan Yates, Ngaire Kerse, Hēmi Whaanga, Sarah Cullum

Introduction: The World Health Organisation (WHO) has developed iSupport for Dementia, a self-paced online training programme for caregivers of people with dementia which is adaptable to different cultural contexts. This scoping review aims to understand the iSupport adaptation process in different countries and provide recommendations for future adaptations.

Methods: A systematic search was done in electronic databases such as Pubmed, MEDLINE, APA PsycINFO, and EMBASE to obtain relevant publications up to 18 February 2024. Only full-text publications describing iSupport cultural adaptation process were included. The publications obtained were reviewed using the Cultural Adaptation Process framework.

Results: Thirteen publications from ten studies were eligible for inclusion. Based on the Cultural Adaptation Process framework, the steps undertaken in the studies were grouped into: (i) setting the stage, (ii) initial adaptation, and (iii) adaptation iterations. The three significant players in this process are the intervention developer (researchers), the cultural adaptation specialist (researchers, caregivers, and dementia care professionals), and the target community (caregivers). In the publications reviewed, cultural adaptation was mostly undertaken using a co-design process between researchers, caregivers, and dementia care professionals deciding on necessary modifications.

Conclusion: iSupport for Dementia is a versatile programme to support caregivers and is readily available for adaptation to different cultural settings. It is essential to engage caregivers early in co-designing its cultural adaptations to ensure their needs can be met by this online tool.

导言:世界卫生组织(WHO)开发了 iSupport for Dementia,这是一个针对痴呆症患者护理人员的自定进度在线培训项目,可适应不同的文化背景。本范围综述旨在了解 iSupport 在不同国家的适应过程,并为未来的适应提供建议:在 Pubmed、MEDLINE、APA PsycINFO 和 EMBASE 等电子数据库中进行了系统检索,以获取截至 2024 年 2 月 18 日的相关出版物。只纳入了描述 iSupport 文化适应过程的全文出版物。我们采用文化适应过程框架对所获得的出版物进行了审查:来自 10 项研究的 13 篇出版物符合纳入条件。根据文化适应过程框架,这些研究的步骤分为:(i) 设定阶段,(ii) 初始适应,(iii) 适应迭代。这一过程中的三个重要角色是干预措施开发人员(研究人员)、文化适应专家(研究人员、护理人员和痴呆症护理专业人员)以及目标社区(护理人员)。在所查阅的出版物中,文化适应大多是通过研究人员、护理人员和痴呆症护理专业人员之间的共同设计过程来进行的,由他们决定必要的修改。让护理人员尽早参与到共同设计其文化适应性的过程中至关重要,以确保这一在线工具能够满足他们的需求。
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引用次数: 0
Implementing Montessori approaches after training: A mixed methods study to examine staff understanding and movement toward action. 培训后实施蒙特梭利方法:采用混合方法研究员工对蒙台梭利的理解和行动。
Pub Date : 2024-10-01 Epub Date: 2024-07-22 DOI: 10.1177/14713012241263712
Katherine A Kennedy, A Lynn Snow, Whitney L Mills, Sylvia Haigh, Amy Mochel, Kimberly Curyto, Teddy Bishop, Christine W Hartmann, Cameron J Camp, Michelle M Hilgeman

Background: This paper uses Normalization Process Theory (NPT) to examine staff impressions of Montessori-based program training and implementation at Veterans Affairs Community Living Centers (VA CLCs; nursing homes). Methods: We conducted a mixed-methods evaluation of Montessori Approaches to Person-Centered Care (MAP-VA) at eight VA CLCs. Trainings were conducted as either a live virtual course or a pre-recorded asynchronous class. Two NPT constructs, coherence building and cognitive participation, informed qualitative interview questions, surveys, and analyses focused on staff movement from knowledge to action during initial implementation. Data collection included staff-completed standardized post-training exams (N = 906), post-training evaluations (N = 761), and optional validated surveys on perceptions of Montessori training (N = 307). Champions (peer-leaders) from each CLC completed semi-structured qualitative interviews post-training (N = 22). Findings: The majority of staff (83%-90%) passed all courses. Staff evaluated the training highly (80%+ agreement) on learning relevant new knowledge and confidence applying new skills. On average, staff felt MAP-VA would become a normal part of their work (7.68/10 scale), and reported increased familiarity with Montessori approaches after training (p = .002). Qualitative interview data from staff trained in Montessori supported three themes concordant with the NPT dimensions of coherence building and cognitive participation. (1) Coherence regarding Montessori: staff demonstrated an understanding of the program and mentioned the benefits of Montessori compared to their previous usual routines. Cognitive participation or engagement with Montessori: (2) staff had positive feelings about Montessori principles/applications and demonstrated a willingness to try the Montessori approach, and (3) staff made sense of the new intervention through early rehearsal of Montessori principles/practices and recognized opportunities for using Montessori in future interactions. Conclusions: Montessori virtual training resulted in high levels of coherence and cognitive participation among multidisciplinary staff, evidenced by high knowledge, self-efficacy, and readiness to act. The asynchronous and synchronous trainings were accessible, relevant, and supported diverse learners.

背景:本文采用规范化过程理论(NPT)来研究退伍军人事务社区生活中心(VA CLCs;疗养院)的工作人员对基于蒙特梭利的项目培训和实施的印象。方法:我们在八家退伍军人事务社区生活中心对蒙特梭利以人为本的护理方法(MAP-VA)进行了混合方法评估。培训以现场虚拟课程或预先录制的异步课堂的形式进行。两个 NPT 构建(一致性构建和认知参与)为定性访谈问题、调查和分析提供了依据,重点关注员工在初步实施过程中从知识到行动的转变。数据收集包括由员工完成的标准化培训后考试(906 人)、培训后评估(761 人),以及对蒙特梭利培训看法的可选有效调查(307 人)。每个中心学习中心的冠军(同伴领导者)在培训后完成了半结构化定性访谈(N = 22)。调查结果:大多数员工(83%-90%)通过了所有课程。在学习相关新知识和应用新技能的信心方面,员工对培训给予了高度评价(80%以上同意)。平均而言,教职员工认为 MAP-VA 将成为他们工作的正常部分(7.68/10 分制),并称培训后对蒙台梭利方法的熟悉程度有所提高(p = .002)。从接受过蒙特梭利培训的教职员工那里获得的定性访谈数据表明,有三个主题与 NPT 的 "建立一致性 "和 "认知参与 "维度是一致的。(1) 关于蒙特梭利的一致性:教职员工表现出对项目的理解,并提到蒙特梭利与他们 以前的常规工作相比的好处。对蒙特梭利的认知参与:(2)员工对蒙特梭利原则/应用有积极的感受,并表现出尝试蒙特梭利方法的意愿;(3)员工通过早期演练蒙特梭利原则/实践,对新的干预措施有所了解,并认识到在未来的互动中使用蒙特梭利的机会。结论:蒙台梭利虚拟培训使多学科工作人员的知识水平、自我效能感和行动准备程度达到了很高的连贯性和认知参与度。异步培训和同步培训都具有可访问性、相关性,并支持不同的学习者。
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引用次数: 0
Time perception among people living with and without dementia: A scoping review. 痴呆症患者和非痴呆症患者的时间感知:范围综述。
Pub Date : 2024-10-01 Epub Date: 2024-05-31 DOI: 10.1177/14713012241257299
Natasha L Gallant, Chelsea L Russill, Natasha C Taylor, Sarah Nakonechny, Amara Kohlert, Kyley Ewing

Dementia often manifests with profound alterations in perception, but it is unclear if and to what extent time perception is altered among people living with dementia compared to those experiencing normal aging. Thus, this scoping review aimed to answer the following research questions: (1) What study designs, participants, time intervals, paradigms, tests, and scores have been employed and in which countries were these methods employed to study time perception in dementia? (2) In which ways do time perception differ across individuals living with and without dementia? (3) In which ways do time perception differ across individuals living with different types of dementia? After deduplication, title and abstract screening, and full-text review, a total of 12 studies were included in this scoping review. Findings generally indicated that people living with dementia perceive time differently than people living without dementia, and that some differences across dementia diagnoses may exist, but the body of literature on time perception in dementia was quite limited. Future research should focus on replicating findings while extending the research to look beyond the dementia versus non-dementia dichotomy as differences across dementia diagnoses may exist. Moreover, if people living with dementia (and, in particular, living with different dementia diagnoses) experience time differently from those experiencing normal aging, we need to begin to address these differences in dementia-friendly initiatives to improve well-being for this population.

痴呆症通常表现为知觉的深刻改变,但与正常衰老的人相比,痴呆症患者的时间知觉是否会发生改变以及改变的程度如何,目前尚不清楚。因此,本综述旨在回答以下研究问题:(1) 采用了哪些研究设计、参与者、时间间隔、范式、测试和评分,以及在哪些国家采用了这些方法来研究痴呆症患者的时间知觉?(2) 有痴呆症和没有痴呆症的人在时间感知方面有哪些不同?(3) 不同类型痴呆症患者的时间知觉在哪些方面存在差异?经过删减、标题和摘要筛选以及全文审阅,共有 12 项研究被纳入本次范围界定综述。研究结果普遍表明,痴呆症患者对时间的感知与非痴呆症患者不同,而且不同痴呆症诊断之间可能存在一些差异,但有关痴呆症患者时间感知的文献非常有限。未来的研究应侧重于复制研究结果,同时将研究扩展到痴呆与非痴呆的二分法之外,因为不同痴呆诊断可能存在差异。此外,如果痴呆症患者(尤其是诊断为不同痴呆症的患者)对时间的感知与正常衰老患者不同,我们就需要在痴呆症友好计划中着手解决这些差异,以改善这一人群的福祉。
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引用次数: 0
A mixed methods evaluation of the music and psychology and social connections (MAPS) pilot - A dyadic intervention for couples affected by young-onset dementia. 音乐、心理和社会联系(MAPS)试点项目的混合方法评估--针对受年轻痴呆症影响的夫妇的伴侣干预。
Pub Date : 2024-10-01 Epub Date: 2024-06-21 DOI: 10.1177/14713012241263151
Samantha M Loi Franzcp PhD Mbbs, Claire J Cadwallader, Phoebe A Stretton-Smith, Libby Flynn, Anne Pf Wand, Christina Bryant, Felicity A Baker

Introduction: People living with young-onset dementia and their care-partners are at risk of a range of adverse mental health outcomes and social isolation. There are few interventions aimed at supporting couples affected by young-onset dementia, which poses unique psychosocial challenges for younger people.

Methodology: This pre-post interventional mixed methods pilot study aimed to assess the feasibility and acceptability of an online group program for people with young-onset dementia and their care-partners living at home in Australia. The Music And Psychology and Social connections (MAPS) program aimed to address: (1) the challenges and changes associated with young-onset dementia; and (2) coping and wellbeing. The program involved six weekly two-hour sessions co-facilitated by a psychologist and music therapist, and a private Facebook group. The primary outcomes of feasibility and acceptability were assessed through a post-program focus group, separate individual feedback sessions with each couple, and a program evaluation questionnaire. Thematic analysis was conducted on the focus group transcripts and field notes from couple feedback sessions. We also examined the preliminary utility of MAPS in improving mental health and social connectedness, using quantitative pre-post-measures.

Results: Five couples completed the MAPS program. The most common dementia type was Alzheimer's Disease. Participant attendance was 87% across all sessions. Qualitative findings supported acceptability of the program with four emergent themes: being connected to others with shared experiences; reframing thoughts and feelings about dementia; music as a therapeutic tool; and benefits of MAPS.

Conclusion: The high retention rate, qualitative findings and positive program evaluation suggest MAPS may be a promising, feasible and acceptable program for couples affected by young-onset dementia.

简介年轻痴呆症患者及其护理伴侣面临着一系列不良心理健康后果和社会孤立的风险。目前很少有干预措施旨在为受年轻痴呆症影响的夫妇提供支持,这给年轻人带来了独特的社会心理挑战:这项干预前-干预后混合方法试点研究旨在评估一项在线小组项目的可行性和可接受性,该项目面向居住在澳大利亚家中的年轻痴呆症患者及其护理伴侣。音乐与心理和社会联系(MAPS)项目旨在解决以下问题:(1) 与年轻痴呆症相关的挑战和变化;以及 (2) 应对和福祉。该计划包括由心理学家和音乐治疗师共同主持的每周六次、每次两小时的课程,以及一个私人 Facebook 小组。可行性和可接受性的主要结果通过计划后的焦点小组、与每对夫妇单独进行的个人反馈会议以及计划评估问卷进行评估。我们对焦点小组的记录和夫妻反馈会的现场记录进行了主题分析。我们还使用定量的前-后测量方法,对 MAPS 在改善心理健康和社会联系方面的初步效用进行了研究:结果:五对夫妇完成了 MAPS 计划。最常见的痴呆类型是阿尔茨海默病。所有课程的参与者出席率为 87%。定性研究结果支持该计划的可接受性,其中有四个新出现的主题:与有共同经历的人建立联系;重构对痴呆症的想法和感受;音乐作为一种治疗工具;以及 MAPS 的益处:高保留率、定性研究结果和积极的项目评估表明,MAPS 对于受年轻痴呆症影响的夫妇来说,可能是一个有前景、可行且可接受的项目。
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引用次数: 0
How do care partners overcome the challenges associated with falls of community-dwelling older people with dementia? A qualitative study. 护理伙伴如何克服社区老年痴呆症患者跌倒带来的挑战?一项定性研究。
Pub Date : 2024-10-01 Epub Date: 2024-07-21 DOI: 10.1177/14713012241267137
Yuanjin Zhou, Nirali Thakkar, Elizabeth A Phelan, Emily Ishado, Chih-Ying Li, Soo Borson, Tatiana Sadak

Background and objectives: Previous studies have found that falls among community-dwelling older people with dementia negatively impact the health and well-being of their relative/friend care partners. Limited studies have explored the challenges care partners experience because of older people's falls (including fall incidents and fall risks). We sought to investigate care partners' experiences of these challenges and how care partners responded.

Methods: We conducted an inductive thematic analysis of 48 dementia care partner interviews (age range: 33-86, mean: 61, 70.8% women; 58.3% adult children; 29.2% spouse; 62.5% completed college; 25% people of color), conducted after a health crisis of older people with dementia from three local university-affiliated hospitals in the United States.

Findings: Care partners reported that falls in older people with dementia can intensify overall care demands and lead to self-sacrificing behaviors, dissatisfaction with healthcare providers, conflicts with care recipients, and intense emotions. Care partners described several adaptations to mitigate these impacts, including practicing acceptance, approaching falls as an opportunity for learning, facilitating collaborations within formal/informal care networks, collaborating with older people with dementia to balance autonomy and safety, and modifying the physical environment.

Discussions and implications: Falls among older people with dementia are a significant stressor and an important activation stimulus for their care partners. Our findings suggest that care partners are "second clients" and "competent collaborators." As they provide important insights about fall prevention, care partners should be engaged to co-design new multi-level interventions to facilitate collaborations among care networks, older people with dementia, and service providers.

背景和目的:以往的研究发现,居住在社区的老年痴呆症患者跌倒会对其亲属/朋友护理伙伴的健康和福祉产生负面影响。对护理伙伴因老年人跌倒而面临的挑战(包括跌倒事件和跌倒风险)进行探讨的研究有限。我们试图调查护理伙伴在这些挑战中的经历以及护理伙伴是如何应对的:我们对 48 个痴呆症护理伙伴访谈进行了归纳式主题分析(年龄范围:33-86 岁,平均年龄:30-45 岁):方法:我们对 48 个痴呆症护理伙伴访谈(年龄范围:33-86 岁,平均61,70.8% 为女性;58.3% 为成年子女;29.2% 为配偶;62.5% 为大学毕业;25% 为有色人种):护理伙伴报告说,痴呆症老年人跌倒会加剧整体护理需求,导致自我牺牲行为、对医疗服务提供者的不满、与护理对象的冲突以及强烈的情绪。护理伙伴介绍了几种减轻这些影响的适应方法,包括练习接受、将跌倒作为学习的机会、促进正规/非正规护理网络内的合作、与痴呆症老年人合作以平衡自主性和安全性,以及改变物理环境:患有痴呆症的老年人跌倒对其护理伙伴来说是一个巨大的压力,也是一个重要的激活刺激因素。我们的研究结果表明,护理伙伴是 "第二客户 "和 "称职的合作者"。由于他们提供了有关预防跌倒的重要见解,因此应让护理伙伴参与共同设计新的多层次干预措施,以促进护理网络、痴呆症老年人和服务提供者之间的合作。
{"title":"How do care partners overcome the challenges associated with falls of community-dwelling older people with dementia? A qualitative study.","authors":"Yuanjin Zhou, Nirali Thakkar, Elizabeth A Phelan, Emily Ishado, Chih-Ying Li, Soo Borson, Tatiana Sadak","doi":"10.1177/14713012241267137","DOIUrl":"10.1177/14713012241267137","url":null,"abstract":"<p><strong>Background and objectives: </strong>Previous studies have found that falls among community-dwelling older people with dementia negatively impact the health and well-being of their relative/friend care partners. Limited studies have explored the challenges care partners experience because of older people's falls (including fall incidents and fall risks). We sought to investigate care partners' experiences of these challenges and how care partners responded.</p><p><strong>Methods: </strong>We conducted an inductive thematic analysis of 48 dementia care partner interviews (age range: 33-86, mean: 61, 70.8% women; 58.3% adult children; 29.2% spouse; 62.5% completed college; 25% people of color), conducted after a health crisis of older people with dementia from three local university-affiliated hospitals in the United States.</p><p><strong>Findings: </strong>Care partners reported that falls in older people with dementia can intensify overall care demands and lead to self-sacrificing behaviors, dissatisfaction with healthcare providers, conflicts with care recipients, and intense emotions. Care partners described several adaptations to mitigate these impacts, including practicing acceptance, approaching falls as an opportunity for learning, facilitating collaborations within formal/informal care networks, collaborating with older people with dementia to balance autonomy and safety, and modifying the physical environment.</p><p><strong>Discussions and implications: </strong>Falls among older people with dementia are a significant stressor and an important activation stimulus for their care partners. Our findings suggest that care partners are \"second clients\" and \"competent collaborators.\" As they provide important insights about fall prevention, care partners should be engaged to co-design new multi-level interventions to facilitate collaborations among care networks, older people with dementia, and service providers.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1152-1171"},"PeriodicalIF":0.0,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11437702/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141735861","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Embodied leisure experiences of nature-based activities for people living with dementia. 痴呆症患者在自然活动中的体现性休闲体验。
Pub Date : 2024-10-01 Epub Date: 2024-07-26 DOI: 10.1177/14713012241262384
Steven Owen, Stephen Page, Katie Ledingham, Stephan Price, Joanne Connell, Catherine Quinn, Linda Clare

Purpose: This article adopts an embodiment lens to explore the individual leisure experiences of people living with dementia when engaging in nature-based pursuits. It focuses on how people living with dementia frame their everyday experiences of nature and how these are shaped by any cognitive challenges and/or other comorbidities affecting physical health.

Design/methodology/approach: Taking a phenomenological research approach, we interviewed 15 people living with dementia and 15 family carers of people with dementia to explore how people with dementia engage with nature as a subjective leisure experience. We analysed their accounts using reflexive thematic analysis.

Findings: The findings reveal how people living with dementia frame their experiences of nature-based pursuits through three interlinked themes of 'bodily feelings and emotions', 'sense of self and identity' and 'connectivity to others'.

Originality/value: The paper contributes to knowledge by examining through the lens of embodiment a neglected and overlooked dimension of everyday leisure: how nature is encountered, negotiated and enjoyed. The paper illustrates how nature and the outdoors may help people living with dementia to continue to enjoy prior leisure pursuits and thus achieve a degree of continuity in their everyday lives.

目的:本文采用体现视角来探讨痴呆症患者在参与自然活动时的个人休闲体验。文章重点关注痴呆症患者如何构建他们对大自然的日常体验,以及这些体验如何受到认知挑战和/或其他影响身体健康的合并症的影响:我们采用现象学研究方法,对 15 名痴呆症患者和 15 名痴呆症患者的家庭照顾者进行了访谈,以探讨痴呆症患者如何将大自然作为一种主观休闲体验。我们使用反思性主题分析法对他们的叙述进行了分析:研究结果:研究结果揭示了痴呆症患者如何通过 "身体感受和情绪"、"自我意识和身份认同 "以及 "与他人的联系 "这三个相互关联的主题来构建他们的自然体验:本文通过体现的视角研究了日常休闲中一个被忽视和忽视的方面,即如何接触、协商和享受自然,从而为知识的积累做出了贡献。论文阐述了自然和户外活动如何帮助痴呆症患者继续享受以前的休闲活动,从而在一定程度上保持日常生活的连续性。
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引用次数: 0
Are quality of care instruments inclusive of older people living with dementia? A scoping review in long-term care settings. 护理质量工具是否包括老年痴呆症患者?对长期护理机构的范围审查。
Pub Date : 2024-10-01 Epub Date: 2024-08-09 DOI: 10.1177/14713012241270758
Digisie M Jemere, Julie Ratcliffe, Jyoti Khadka, Kiri Lay, Rachel Milte

More than half of older people in long-term care facilities have dementia. Little is currently known about the methods and instruments which can be used to capture the perspectives of older people, including those with dementia, regarding the quality of care provided in such facilities. The main aims of this scoping review were two-fold. Firstly, to identify quality of care instruments that have been applied in long-term care settings. Secondly, to evaluate how these instruments have been developed and validated, particularly in terms of their applicability among older people with dementia. Seven databases (Medline, Web of Science, Scopus, ProQuest, Ageline, CINHAL and google scholar) were searched for relevant literature without any date limit. We used quality criteria adapted from COSMIN (Consensus-based Standards for the selection of health status Measurement Instruments) guidelines to assess the psychometric properties of the instruments. The search identified 16 quality of care instruments which had been used in long-term care settings. Of which, two (12.5%) were specifically designed for older people with dementia, and three instruments (18.7%) were modified for use with older people with mild to moderate dementia. A variety of methods were used to develop the identified instruments including literature reviews, qualitative interviews, expert panel reviews, pre-testing and piloting with older people. None of the identified instruments had been subjected to comprehensive psychometric assessment. Most instruments for assessing quality of care in long term care settings lack alternative communication techniques tailored to people with dementia. This review highlights the need for more rigorous psychometric testing of existing instruments for assessing quality of care in long-term care settings. Several existing measures show promise and may be taken forward for further testing and development for widespread application with older people, including those living with dementia, in long term care settings.

长期护理机构中一半以上的老年人患有痴呆症。目前,人们对可用于了解老年人(包括痴呆症患者)对此类机构所提供护理质量的看法的方法和工具知之甚少。本次范围界定研究的主要目的有两个。首先,确定已应用于长期护理机构的护理质量工具。其次,评估这些工具是如何开发和验证的,尤其是在老年痴呆症患者中的适用性。我们在七个数据库(Medline、Web of Science、Scopus、ProQuest、Ageline、CINHAL 和 google scholar)中搜索了相关文献,没有任何日期限制。我们使用改编自 COSMIN(基于共识的健康状况测量工具选择标准)指南的质量标准来评估工具的心理测量特性。搜索发现了 16 种用于长期护理环境的护理质量工具。其中,有两份(12.5%)是专门为老年痴呆症患者设计的,有三份(18.7%)是为轻度至中度痴呆症患者设计的。在开发所确定的工具时使用了多种方法,包括文献综述、定性访谈、专家小组审查、预先测试以及在老年人中试用。所有确定的工具都没有经过全面的心理测量评估。大多数用于评估长期护理环境中护理质量的工具都缺乏针对痴呆症患者的替代性沟通技巧。本综述强调了对现有长期护理环境中护理质量评估工具进行更严格心理测试的必要性。一些现有的测量方法显示出了良好的前景,可以进行进一步的测试和开发,以便在长期护理环境中广泛应用于老年人,包括痴呆症患者。
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引用次数: 0
Understanding dementia in minority ethnic communities: The perspectives of key stakeholders interviewed as part of the IDEAL programme. 了解少数民族社区的痴呆症:作为 IDEAL 计划的一部分,对主要利益相关者进行了访谈。
Pub Date : 2024-10-01 Epub Date: 2024-08-17 DOI: 10.1177/14713012241272817
Christina R Victor, Eleanor van den Heuvel, Claire Pentecost, Catherine Quinn, Catherine Charlwood, Linda Clare

Future populations of older adults in the UK, those aged 65+, will demonstrate increased diversity in terms of their ethnic identity resultant from the ageing of the post-war migrants from India, Pakistan, Bangladesh, and the Caribbean. As a consequence, there will be an increase in the numbers of older adults from these communities living with age-related chronic diseases such as dementia. In response to these demographic changes, we need to develop a research, policy and practice agenda that is inclusive and provides evidence for the development of culturally diverse and effective models of service delivery. This requires engagement with three key stakeholder groups: (a) people with dementia; (b) their carers; and (c) the wider community. As part of the IDEAL research programme on living well with dementia, we undertook semi-structured interviews with twelve community leaders, defined as known and trusted individuals active in their respective communities, and six community members (two people living with dementia and four carers). We explored their understandings, experiences, and views of about dementia. Our analysis identified two overarching themes. The migrant lifecourse highlighted issues of not belonging, discrimination and racism. This framed our second theme, the cultural context of dementia, which addressed dementia knowledge and attitudes, service provision and service access, and how being part of a minority ethnic community made a difference to these experiences. Our study highlights how lifecourse experiences of negative hostile social and policy environments and services can be profound and long-lasting and provide a prism through which accessing dementia care is experienced. Our findings argue for the inclusion of diverse views and lifecourse experiences within the context of developing a dementia strategy for research, policy and practice that is appropriate for a multicultural and heterogenous society.

由于战后来自印度、巴基斯坦、孟加拉国和加勒比海地区的移民逐渐老龄化,未来英国 65 岁以上的老年人口在种族特征方面将表现出更大的多样性。因此,这些社区中患有老年性慢性疾病(如痴呆症)的老年人数量将会增加。为了应对这些人口结构的变化,我们需要制定一个具有包容性的研究、政策和实践议程,并为发展具有文化多样性的有效服务模式提供证据。这需要三个关键利益相关群体的参与:(a) 痴呆症患者;(b) 他们的照顾者;(c) 更广泛的社区。作为 "IDEAL "痴呆症患者健康生活研究计划的一部分,我们对 12 名社区领袖(指活跃在各自社区的知名人士和值得信赖的人士)和 6 名社区成员(2 名痴呆症患者和 4 名照护者)进行了半结构化访谈。我们探讨了他们对痴呆症的理解、经历和看法。我们的分析确定了两大主题。移民的生命历程凸显了无归属感、歧视和种族主义等问题。这构成了我们的第二个主题,即痴呆症的文化背景,涉及痴呆症的知识和态度、服务提供和服务获取,以及作为少数民族社区的一员如何对这些经历产生影响。我们的研究强调了消极敌对的社会和政策环境及服务是如何深刻而持久地影响着人的一生,并为人们获得痴呆症护理提供了多棱镜。我们的研究结果表明,在制定适合多元文化和异质社会的痴呆症研究、政策和实践战略时,应纳入不同的观点和人生经历。
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引用次数: 0
Understanding the impact of dementia on spousal relationships: A qualitative study with female spousal carers of people living with dementia. 了解痴呆症对配偶关系的影响:对痴呆症患者女性配偶照顾者的定性研究。
Pub Date : 2024-09-27 DOI: 10.1177/14713012241286559
Elien Van Hout, Milena Contreras, Eneida Mioshi, Naoko Kishita

Background: Dementia does not merely affect individuals, the carer and the person living with dementia, but also has a profound impact on their spousal relationship. As such, this study aimed to gain a deeper understanding of how dementia affects spousal relationships with a focus on interpersonal (i.e. relationship adjustment, communication engagement and emotional connection between two individuals) and intrapersonal (i.e. loss of self within the context of relationships) dynamics using a qualitative approach. The study also explored how carers adapt to such relationship challenges in the context of dementia care.Methods: A phenomenological approach was used to capture the subjective experiences of female spousal carers, who regularly support their partner living with dementia. A total of nine semi-structured interviews were conducted.Results: Relationship adjustment theme highlighted how learning to acknowledge role shifts from a spouse to a carer is critical for carers to manage relationship difficulties. Emotional connection theme demonstrated the importance of reminiscing about the shared history between dyads to cope with feelings of loss of affective intimacy. Communication engagement theme revealed carers' need to learn a new way of communicating due to the decrease in meaningful communication and two-way interaction. Sense of self theme highlighted the importance of self-compassion to overcome feelings of self-loss and isolation.Conclusion: Findings suggest that improving the relationship between female spousal carers and their partner living with dementia may require targeted interventions addressing different factors. Such interventions can include a couple's life story approach to enable couples to reminisce about their shared experiences, interactive communication training to enhance meaningful engagements, and a psychological approach such as compassion-focused therapy to overcome emotional challenges and facilitate self-compassion.

背景:痴呆症不仅影响个人、照护者和痴呆症患者,还会对他们的配偶关系产生深远影响。因此,本研究旨在采用定性方法,深入了解痴呆症如何影响配偶关系,重点关注人际关系(即两个人之间的关系调整、沟通参与和情感联系)和人际关系(即在关系中失去自我)的动态变化。研究还探讨了在痴呆症护理的背景下,护理者如何适应这种关系挑战:研究采用了现象学方法来捕捉女性配偶照护者的主观体验,这些女性照护者经常为患有痴呆症的伴侣提供支持。共进行了九次半结构式访谈:关系调整主题强调了学会承认从配偶到照护者的角色转变对于照护者处理关系困难至关重要。情感联系主题表明,回忆两人之间的共同历史对于应对失去亲密情感的感觉非常重要。沟通参与主题表明,由于有意义的沟通和双向互动减少,照顾者需要学习新的沟通方式。自我意识主题强调了自我同情对于克服自我丧失和孤立感的重要性:研究结果表明,要改善女性配偶照顾者与痴呆症患者伴侣之间的关系,可能需要针对不同因素采取有针对性的干预措施。这些干预措施可以包括夫妻生活故事法,让夫妻回忆共同的经历;互动式沟通培训,以加强有意义的接触;以及心理学方法,如以同情为中心的疗法,以克服情感挑战并促进自我同情。
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引用次数: 0
'What are nurses' and healthcare workers' cultural understandings of dementia?' An integrative literature review. 护士和医护人员对痴呆症的文化理解是什么?综合文献综述。
Pub Date : 2024-09-21 DOI: 10.1177/14713012241285525
Catharine Jenkins, Analisa Smythe

Aim: to explore the range of cultural understandings of dementia held by people providing nursing care globally.Background: There is a worldwide shortage of nurses and healthcare workers, resulting in extensive global mobility among the workforce. Cultural competence is expected of nurses who serve diverse populations and although self-awareness is recognised as crucial in developing this ability, the focus has tended to be on the identity of the patient and adjusting care according to their specific needs. However, taken-for-granted assumptions drive unconscious judgements and therefore behaviour so nurses' dementia-related understandings are worthy of exploration.Design: An integrative literature review, comprising five stages: problem identification; literature search; data evaluation; data analysis; and presentation of the findings.Methods: Six databases were searched for original research published between 1997 and 2023. Studies which focus on qualified/registered and unqualified/unregistered healthcare workers' cultural understandings of dementia were included. Studies were evaluated using a tool designed for the critical assessment of qualitative research. Data was extracted using a bespoke spreadsheet. Conventional content analysis was undertaken to develop a synthesised summary of the findings of the studies.Findings: 11 papers met the inclusion criteria. Content analysis led to identification of two main themes: 'Stigma as a common factor in cultural perceptions of dementia', and 'Stigma derived from cultural perceptions has consequences for people living with dementia'.Conclusion: An international perspective facilitated insight into alternative perceptions of the nature of dementia and care responses. A version of the 'Relationship Centred Care' model, expanded to include the wider community, could support theoretical and practical recommendations for culturally congruent approaches to care. Further research is required to examine the usefulness of incorporating this approach internationally.Reporting Method: The authors followed the ENTREQ reporting guidelines (Tong et al., 2012).

目的:探讨全球护理人员对痴呆症的各种文化理解:背景:全球护士和医护人员短缺,导致劳动力在全球范围内广泛流动。虽然自我意识被认为是培养这种能力的关键,但人们往往将重点放在病人的身份以及根据他们的具体需求调整护理上。然而,理所当然的假设会驱动无意识的判断,进而影响行为,因此护士对痴呆症的相关理解值得探讨:设计:综合文献综述,包括五个阶段:发现问题、文献检索、数据评估、数据分析和结果陈述:我们在六个数据库中搜索了 1997 年至 2023 年间发表的原创研究。重点关注合格/注册和不合格/未注册医护人员对痴呆症的文化理解的研究被纳入其中。研究评估采用了一种专为定性研究的批判性评估而设计的工具。使用定制的电子表格提取数据。采用传统的内容分析法对研究结果进行综合总结:11 篇论文符合纳入标准。通过内容分析,确定了两大主题:"成见是痴呆症文化观念中的共同因素 "和 "文化观念产生的成见会对痴呆症患者造成影响":国际视角有助于深入了解人们对痴呆症的性质和护理对策的不同看法。将 "以关系为中心的护理 "模式扩展到更广泛的社区,可以为理论和实践建议提供支持,从而提供与文化相一致的护理方法。需要进一步开展研究,以探讨在国际范围内采用这种方法的实用性:作者遵循 ENTREQ 报告指南(Tong 等人,2012 年)。
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引用次数: 0
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Dementia (London, England)
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