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Estimating the number of people living with dementia at different stages of the condition in India: A Delphi process. 估算印度不同阶段痴呆症患者的人数:德尔菲进程。
Pub Date : 2024-04-01 Epub Date: 2023-06-05 DOI: 10.1177/14713012231181627
Nicolas Farina, Jayeeta Rajagopalan, Suvarna Alladi, Aliaa Ibnidris, Cleusa P Ferri, Martin Knapp, Adelina Comas-Herrera

Introduction: Numerous studies have previously estimated the dementia prevalence in India. However, as these estimates use different methodologies and sampling strategies, generating definitive prevalence estimates can be difficult.

Methods: A Delphi process involving eight clinical and academic experts provided prevalence estimates of dementia within India, split by sex and age. The experts were also asked to estimate the number of people potentially living at different stages of the condition. A priori criteria were used to ascertain the point in which consensus was achieved.

Results: Our consensus estimates generated a dementia prevalence of 2.8% (95% CI = 1.9 to 3.6) for those aged 60 years and above in India. Consensus was achieved across age and sex prevalence estimates, with the exception of one (females aged 60-64). Our experts estimated that 42.9% of people living with dementia in India had a mild severity.

Conclusions: The findings indicate that there could be approximately 3.9 million people living with dementia in India, of which 1.7 million could be living with dementia of mild severity. Such estimates can better help researchers and policy makers to estimate the true cost and impact of dementia in India and can inform resource allocation decisions.

介绍:之前有许多研究对印度的痴呆症患病率进行了估计。然而,由于这些估计采用了不同的方法和抽样策略,因此很难得出确切的患病率估计值:方法:八位临床和学术专家参与了德尔菲程序,按性别和年龄对印度的痴呆症患病率进行了估算。专家们还被要求估算可能生活在痴呆症不同阶段的人数。我们采用先验标准来确定达成共识的时间点:根据我们的共识估计,印度 60 岁及以上人群的痴呆症患病率为 2.8%(95% CI = 1.9 至 3.6)。除了一个例外(60-64 岁女性),其他年龄和性别的患病率估计值都达成了共识。我们的专家估计,印度 42.9% 的痴呆症患者病情较轻:研究结果表明,印度约有 390 万痴呆症患者,其中 170 万可能患有轻度痴呆症。这样的估算可以更好地帮助研究人员和决策者估算印度痴呆症的真实成本和影响,并为资源分配决策提供依据。
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引用次数: 0
The dementia severity rating scale: A potential community screening tool for dementia in low- and middle-income countries. 痴呆症严重程度量表:中低收入国家痴呆症的潜在社区筛查工具。
Pub Date : 2024-04-01 Epub Date: 2023-12-14 DOI: 10.1177/14713012231186837
Yuda Turana, Nicolas Farina, Imelda Theresia, Fasihah Irfani Fitri, Ika Suswanti, Roxanne Jacobs, Marguerite Schneider, Tara Puspitarini Sani, Adelina Comas-Herrera, Emiliano Albanese, Ishtar Govia, Cleusa P Ferri, Martin Knapp, Sube Banerjee

Background: The Dementia Severity Rating Scale (DSRS) is an informant report, dementia staging tool that is quick to administer and has previous been shown to differentiate between people with dementia and healthy controls. However, it is not clear how accurate the tool is screening against diagnostic criteria in middle-income settings.

Methods: Embedded within the STRiDE programme, older adults (aged ≥65 years) and their informants were randomly recruited from four sites across Indonesia and South Africa. All informants were asked to complete DSRS. We report the tool's psychometric properties and accuracy against the 10/66 short diagnostic algorithm.

Results: Between September and December 2021, data was collected from 2110 older adults in Indonesia and 408 in South Africa. Overall, the DSRS scores significantly differed between those with and without dementia, as identified on the 10/66 short algorithm (p < .05). The difference between groups remained significant after controlling for key factors related to older adult and informant demographics. A score >2 on the DSRS had the greatest agreement with the 10/66 short algorithm and had excellent discriminative properties in both Indonesia (Area Under Curve (AUC) = .75, 95% CIs = .72-.77) and South Africa (AUC = .82, 95% CIs = .76-.88).

Conclusions: The DSRS has potential as a screening tool for dementia in middle-income countries, with high sensitivity and specificity against a standardized diagnostic algorithm.

背景:痴呆症严重程度评定量表(DSRS)是一种由信息提供者报告的痴呆症分期工具,该工具操作简便,以前曾被证明可以区分痴呆症患者和健康对照者。然而,目前还不清楚该工具在中等收入环境中对照诊断标准进行筛查的准确性:在 STRiDE 计划中,从印度尼西亚和南非的四个地点随机招募老年人(年龄≥65 岁)及其信息提供者。所有信息提供者都被要求完成 DSRS。我们报告了该工具的心理测量特性以及与 10/66 简易诊断算法对照的准确性:2021 年 9 月至 12 月期间,我们收集了印度尼西亚 2110 名老年人和南非 408 名老年人的数据。总体而言,根据 10/66 简易算法确定的痴呆症患者和非痴呆症患者的 DSRS 分数有显著差异(p < .05)。在控制了与老年人和信息提供者人口统计学相关的关键因素后,组间差异仍然显著。在印度尼西亚(Area Under Curve (AUC) = .75,95% CIs = .72-.77)和南非(AUC = .82,95% CIs = .76-.88),DSRS得分大于2分与10/66简易算法的一致性最高,并具有极佳的鉴别特性:DSRS具有在中等收入国家作为痴呆症筛查工具的潜力,与标准化诊断算法相比,具有较高的灵敏度和特异性。
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引用次数: 0
Accessing Dementia Care in Brazil: An Analysis of Case Vignettes. 在巴西获得老年痴呆症护理:案例分析。
Pub Date : 2024-04-01 Epub Date: 2023-05-16 DOI: 10.1177/14713012231176305
Fabiana Araújo Figueiredo Da Mata, Déborah Oliveira, Elaine Mateus, Ana Carolina Arruda Franzon, Carolina Godoy, Maximilian Salcher-Konrad, Chiara De-Poli, Adelina Comas-Herrera, Cleusa P Ferri, Klara Lorenz-Dant

Background and objectives: Despite the rapid increase in the number of people living with dementia in Brazil, dementia care is limited. This study describes how people living with dementia and their carers access care, treatment, and support, and identifies what characteristics are likely to enable or prevent access.

Research design and methods: We created 10 vignettes to illustrate fictitious but realistic scenarios involving people living with dementia in Brazil. The vignettes explore a combination of socioeconomic and demographic variables. They were completed using an in-depth desk review of the dementia care landscape in Brazil; a Strengths, Opportunities, Weaknesses, and Threats (SWOT) analysis of the desk review; and expert knowledge. The analysis focused on identifying common sources of service provision, barriers of access to care and support, and specific issues experienced by some population groups.

Findings: Access to a dementia diagnosis, care, and support for people living with dementia in Brazil is limited. Demographic and socio-economic circumstances play a role in determining the type of services to which a person might have access. Poor knowledge about dementia, lack of capacity in the health system, and lack of formal long-term care support are among the identified barriers to accessing timely diagnosis, care, and support in the country.

Discussion and implications: Understanding the barriers and facilitators of access to diagnosis, treatment, and support for people with dementia and families with different demographic and socioeconomic characteristics is crucial for designing dementia policies that are context-specific and responsive to the care needs of different socioeconomic groups in Brazil.

背景和目标:尽管巴西的痴呆症患者人数迅速增加,但痴呆症护理却十分有限。本研究描述了痴呆症患者及其照护者如何获得护理、治疗和支持,并确定了哪些特征可能促进或阻碍患者获得护理、治疗和支持:我们创作了 10 个小故事,以虚构但真实的场景来说明巴西痴呆症患者的情况。这些小故事综合探讨了社会经济和人口统计学变量。这些小故事是通过对巴西痴呆症护理情况的深入案头回顾、对案头回顾的优势、机会、劣势和威胁(SWOT)分析以及专家知识完成的。分析的重点是确定提供服务的共同来源、获得护理和支持的障碍以及某些人群遇到的具体问题:在巴西,痴呆症患者获得痴呆症诊断、护理和支持的机会有限。人口和社会经济状况决定了患者可获得的服务类型。对痴呆症缺乏了解、医疗系统能力不足以及缺乏正规的长期护理支持,这些都是在巴西及时获得诊断、护理和支持所面临的障碍:了解具有不同人口和社会经济特征的痴呆症患者及其家庭在获得诊断、治疗和支持方面的障碍和促进因素,对于制定针对具体情况、满足巴西不同社会经济群体护理需求的痴呆症政策至关重要。
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引用次数: 0
Economics and dementia: Challenges and responses. 经济学与痴呆症:挑战与对策。
Pub Date : 2024-04-01 Epub Date: 2023-07-28 DOI: 10.1177/14713012231193141
Martin Knapp, Gloria Wong

Economics and dementia are interconnected in many ways. There is, for example, accumulating evidence of the ways in which dementia impacts on the economic status of individuals and families, on health and social care system budgets, and on national economies. An individual's economic status can affect their risk of dementia and their ability to respond to it. Governments and other strategic decision-makers are aware of the (growing, indeed urgent) need to take action - whether that is prevention, treatment or care - but also very aware of the limited resources available to them and to the general population. Research evidence can potentially inform the difficult decisions that government and others need to take. We briefly summarise some economic evaluation studies in the dementia area as a basis for identifying the main challenges of moving from evidence to better policy and practice. We then discuss some possible responses (from a range of stakeholders) to these challenges, and how the STRiDE study has sought to contribute to this fast-moving field.

经济学与痴呆症在许多方面相互关联。例如,越来越多的证据表明,痴呆症对个人和家庭的经济状况、医疗和社会护理系统的预算以及国民经济产生了影响。个人的经济状况会影响他们患痴呆症的风险以及应对痴呆症的能力。各国政府和其他战略决策者都意识到采取行动的必要性(日益增长,甚至是迫在眉睫)--无论是预防、治疗还是护理--但同时也非常清楚他们和普通民众可用的资源有限。研究证据有可能为政府和其他人需要做出的艰难决定提供信息。我们简要总结了痴呆症领域的一些经济评估研究,在此基础上确定了从证据到更好的政策和实践所面临的主要挑战。然后,我们将讨论(来自各利益相关方的)应对这些挑战的一些可能措施,以及 STRiDE 研究如何为这一快速发展的领域做出贡献。
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引用次数: 0
Dementia in South Africa: A Situational Analysis. 南非的老年痴呆症:情况分析。
Pub Date : 2024-04-01 Epub Date: 2023-06-19 DOI: 10.1177/14713012231183358
Roxanne Jacobs, Marguerite Schneider, Nicolas Farina, Petra du Toit, Sumaiyah Docrat, Adelina Comas-Herrera, Martin Knapp

There is a need in South Africa to understand the status of available care and support to strengthen responses to dementia. This study provides a situational analysis of the current provisions of health, care and support for older persons, people living with dementia and their families in South Africa. It is a first step towards describing the landscape of needs and services available, and provides an evidence base to inform priority-setting for strengthening responses to dementia in South Africa. This situational analysis was conducted in three phases: (1) a desk review guided by a comprehensive topic guide which includes the WHO's Global Dementia Observatory indicators; (2) multi-sectoral stakeholder interviews to verify the secondary sources used in the desk review, and to identify gaps and opportunities in policy and service provisions; and (3) a SWOT-analysis examining the strengths, weaknesses, opportunities and threats in current care and support provisions in South Africa. Our findings highlight the gaps and opportunities with current service provision and show how structural factors create barriers to diagnosis, support, and care. There is an urgent need for intersectoral policy responses to support and strengthen current health, social care, and long-term support systems so that people living with dementia and their families can live and age well. This paper forms part of a larger study on strengthening responses to dementia (The STRIDE project).

南非需要了解现有护理和支持的现状,以加强对痴呆症的应对。本研究对南非目前为老年人、痴呆症患者及其家人提供的医疗、护理和支持进行了现状分析。这是描述现有需求和服务状况的第一步,也为南非制定加强痴呆症应对措施的优先事项提供了证据基础。本情况分析分三个阶段进行:(1) 以综合主题指南为指导进行案头审查,其中包括世界卫生组织全球痴呆症观察站的指标;(2) 对多部门利益相关者进行访谈,以核实案头审查中使用的二手资料来源,并确定政策和服务规定中的差距和机遇;(3) 进行 SWOT 分析,检查南非当前护理和支持规定中的优势、劣势、机遇和威胁。我们的研究结果突显了当前服务提供方面的差距和机遇,并显示了结构性因素是如何对诊断、支持和护理造成障碍的。目前迫切需要跨部门的政策应对措施,以支持和加强当前的医疗、社会护理和长期支持系统,从而使痴呆症患者及其家人能够安享晚年。本文是关于加强痴呆症应对措施的大型研究(STRIDE 项目)的一部分。
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引用次数: 0
Living with Dementia in Aotearoa (LiDiA): A Feasibility Study for a Dementia Prevalence Study in Māori and Non-Māori Living in New Zealand. 奥特亚罗瓦痴呆症患者生活(LiDiA):新西兰毛利人和非毛利人痴呆症患病率研究的可行性研究。
Pub Date : 2024-04-01 Epub Date: 2023-05-03 DOI: 10.1177/14713012231173012
Adrian Martinez-Ruiz, Susan Yates, Gary Cheung, Sarah Cullum, Makarena Dudley, Rita Krishnamurthi, Fuafiva Fa'alau, Ngaire Kerse, Mary Roberts, Seini Taufa, Claudia Rivera Rodriguez

Introduction: Recent estimations have projected a threefold increase in dementia prevalence in Aotearoa New Zealand (NZ) by 2050, particularly in Maori and Pacific peoples. However, to date, there are no national data on dementia prevalence, and overseas data are used to estimate the NZ dementia statistics. The aim of this feasibility study was to prepare the groundwork for the first full-scale NZ dementia prevalence study that is representative of Māori, European, Pacific and Asian peoples living in NZ.

Methods: The main feasibility issues were: (i) Sampling to ensure adequate community representation from the included ethnic groups, (ii) Preparing a workforce to conduct the fieldwork and developing quality control, (iii) Raising awareness of the study in the communities (iv) Maximizing recruitment by door-knocking, (v) Retaining those we have recruited to the study and (vi) Acceptability of study recruitment and assessment using adapted versions of the 10/66 dementia protocol in different ethnic groups living in South Auckland.

Results: We found that a probability sampling strategy using NZ Census data was reasonably accurate and all ethnic groups were sampled effectively. We demonstrated that we were able to train up a multi-ethnic workforce consisting of lay interviewers who were able to administer the 10/66 dementia protocol in community settings. The response rate (224/297, 75.5%) at the door-knocking stage was good but attrition at subsequent stages was high and only 75/297 (25.2%) received the full interview.

Conclusions: Our study showed that it would be feasible to conduct a population-based dementia prevalence study using the 10/66 dementia protocol in Māori, European and Asian communities living in NZ, utilizing a qualified, skilled research team representative of the families participating in the study. The study has demonstrated that for recruitment and interviewing in Pacific communities a different but culturally appropriate approach is required.

导言:根据最近的估计,到 2050 年,新西兰奥特亚罗瓦地区的痴呆症患病率将增加三倍,尤其是毛利人和太平洋岛屿族裔。然而,迄今为止,新西兰还没有关于痴呆症患病率的全国性数据,新西兰的痴呆症统计数据是根据海外数据估算的。这项可行性研究的目的是为首次全面开展新西兰痴呆症患病率研究奠定基础,该研究将代表居住在新西兰的毛利人、欧洲人、太平洋人和亚洲人:主要的可行性问题是方法:主要的可行性问题是:(i) 抽样以确保所包括的族裔群体有足够的社区代表性;(ii) 准备开展实地工作的人员并制定质量控制措施;(iii) 提高社区对该研究的认识;(iv) 通过敲门最大限度地招募人员;(v) 留住我们招募的研究人员;(vi) 在南奥克兰不同族裔群体中使用改编版 10/66 痴呆症协议进行研究招募和评估的可接受性:结果:我们发现,使用新西兰人口普查数据的概率抽样策略相当准确,对所有种族群体都进行了有效抽样。我们证明,我们能够培训出一支由非专业访问员组成的多种族工作队伍,他们能够在社区环境中执行 10/66 痴呆症协议。敲门阶段的应答率(224/297,75.5%)很高,但随后阶段的自然减员率很高,只有 75/297(25.2%)人接受了完整的访谈:我们的研究表明,在新西兰的毛利人、欧洲人和亚洲人社区开展基于人群的痴呆症患病率研究是可行的。这项研究表明,在太平洋社区进行招募和访谈时,需要采用不同的、但在文化上适当的方法。
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引用次数: 0
The quality of family relationships in dementia: Mixed methods to unravel mixed feelings. 痴呆症患者的家庭关系质量:用混合方法解读复杂情感。
Pub Date : 2024-02-01 Epub Date: 2023-12-15 DOI: 10.1177/14713012231220759
Maria J Marques, Manuel Gonçalves-Pereira, Marjolein de Vugt, Frans Verhey, Bob Woods

Objective: Close relationships influence health and quality of life outcomes for people with dementia and their families. Yet, we know little on the role of different relationship domains with quantitative methods having proved to have limitations in this research field. We aimed to study these relationship domains over time, contrasting the views of people with dementia and their family carers, making use of both quantitative and qualitative approaches.Methods: A convergent mixed methods design was adopted, analysing longitudinal data (four time points over three years) from 66 dyads of Portuguese community-dwelling people with dementia and their primary carers, from the EU-Actifcare project sample. Quantitative assessments used sociodemographic and clinical variables, and Positive Affect Index scores, with descriptive and inferential analyses. Qualitative data, collected through individual and joint semi-structured interviews, were explored using thematic analysis.Results: Both quantitative and qualitative findings demonstrated that some domains of relationship quality are affected in different ways, with changes occurring at different stages. Some (e.g., 'communication') may even improve after initial decline. 'Closeness' was consistently altered over time, from carers' perspectives, and played an important protective role regarding institutionalisation. Overall, changes in the relationship quality were perceived differently by people with dementia and their carers, and these divergent perspectives often led to tension. Qualitative data revealed that 'mixed feelings' (ambivalence) involve complex experiences, arguably more difficult to manage than negative feelings alone. Furthermore, perceived informal support, particularly from the extended family, and receiving formal services' assistance, seemed to facilitate positive (re)appraisals of the relationship.Conclusions: A deeper understanding of relationship quality and its domains as dementia progresses may help tailoring interventions to tackle modifiable aspects of relationships, meeting the needs and cherishing the resources of dyads and families. Timely assessments could identify relationships at risk and need for support, including for alternative caring arrangements.

目的亲密关系会影响痴呆症患者及其家人的健康和生活质量。然而,我们对不同关系领域的作用知之甚少,定量方法在这一研究领域已被证明具有局限性。我们利用定量和定性方法,旨在对这些关系领域进行长期研究,对比痴呆症患者及其家庭照护者的观点:我们采用了一种融合的混合方法设计,分析了来自欧盟-Actifcare 项目样本的 66 个葡萄牙社区痴呆症患者及其主要照顾者的纵向数据(三年中的四个时间点)。定量评估使用了社会人口学和临床变量以及积极情感指数得分,并进行了描述性和推论性分析。通过个人和联合半结构式访谈收集的定性数据采用主题分析法进行探讨:定量和定性研究结果表明,关系质量的某些领域会受到不同方式的影响,并在不同阶段发生变化。有些领域(如 "沟通")甚至会在最初下降后有所改善。从照护者的角度来看,"亲近 "随着时间的推移不断发生变化,并对机构化起到了重要的保护作用。总体而言,痴呆症患者及其照护者对关系质量的变化有着不同的看法,而这些不同的看法往往会导致关系紧张。定性数据显示,"混合情感"(矛盾)涉及复杂的经历,可以说比单纯的负面情感更难处理。此外,感知到的非正式支持,特别是来自大家庭的支持,以及接受正规服务的帮助,似乎有助于对这种关系进行积极的(重新)评价:随着痴呆症的发展,对人际关系质量及其领域的更深入了解可能有助于定制干预措施,以解决人际关系中可改变的方面,满足双亲和家庭的需求并珍惜其资源。及时的评估可以确定关系中的风险和支持需求,包括替代性照料安排。
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引用次数: 0
Dilemmas and support strategies in dementia care: Experiences of case managers in Taiwan. 失智症照护的困境与支援策略:台湾个案管理者的经验。
Pub Date : 2024-02-01 Epub Date: 2023-12-06 DOI: 10.1177/14713012231221025
Jing-Yi Lu, Ya-Hui Lee, Yi-Fen Wang

Objective: This study aimed to examine the dilemmas encountered and the countermeasures adopted by case managers, who care for individuals with dementia. The study also aimed to identify the types of support and assistance case managers require.Methods: In this qualitative study, the researchers conducted semi-structured interviews with 10 case managers, six from integrated dementia care centers and four from community-based dementia care centers in Taiwan.Results: The results are as follows: (1) Case managers providing services for individuals with dementia primarily encountered two major dilemmas, including cognitive differences (such as a lack of understanding of dementia, differences in ideas about dementia care, and distrust of the professionalism of case managers) with family members and their own insufficient professional capabilities, which made it difficult to reach a consensus on caregiving with family members and address the diverse conditions of individuals with dementia. (2) In response to these dilemmas, case managers adopted various approaches to enhance families' understanding of dementia and facilitate reaching a consensus on care. They also improved their professional capabilities through team discussions and resource networking. (3) The support and assistance required by case managers are continuous learning, the enhancement of their professional competencies, organizational support, and workload management.Conclusion: The findings of this study contribute to an understanding of the dilemmas faced by case managers in Taiwan's centers for integrated dementia care and community-based dementia care centers during policies implementation, as well as the strategies they adopted and the assistance they required. These results can also offer recommendations for policies, professional training, dementia services, and resources to reduce the disparity between policy and practice.

目的:本研究旨在探讨个案管理人员在照顾痴呆症患者时所遇到的困境及采取的对策。这项研究还旨在确定个案管理人员所需的支助和援助类型。方法:本研究采用半结构式访谈法,访谈10位个案管理人员,其中6位来自综合失智护理中心,4位来自社区失智护理中心。结果:结果如下:(1)为痴呆症患者提供服务的病例管理人员主要遇到两大困境,一是与家庭成员的认知差异(如对痴呆症缺乏了解、对痴呆症护理观念的差异、对病例管理人员专业性的不信任),二是自身专业能力不足。这使得很难与家庭成员就护理达成共识,也很难解决痴呆症患者的不同情况。(2)针对这些困境,个案管理者采取了多种方法来提高家属对痴呆症的认识,促进达成护理共识。他们还通过团队讨论和资源网络提高了自己的专业能力。(3)案例管理者需要的支持和帮助是持续学习、专业能力提升、组织支持和工作量管理。结论:本研究结果有助于了解台湾失智综合照护中心与社区失智照护中心个案管理人员在政策执行过程中所面临的困境,以及他们所采取的策略与所需的协助。这些结果还可以为政策、专业培训、痴呆症服务和资源提供建议,以缩小政策与实践之间的差距。
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引用次数: 0
Setting individualised goals for people living with dementia and their family carers: A systematic review of goal-setting outcome measures and their psychometric properties. 为痴呆症患者及其家庭照顾者设定个性化目标:目标设定结果测量及其心理测量特性的系统性回顾。
Pub Date : 2024-02-01 Epub Date: 2023-12-17 DOI: 10.1177/14713012231222309
Jessica Budgett, Andrew Sommerlad, Nuriye Kupeli, Sedigheh Zabihi, Anna Olsen, Claudia Cooper

Background: Individualised goal-setting outcome measures can be a useful way of reflecting people living with dementia and family carers' differing priorities regarding quality-of-life domains in the highly heterogeneous symptomatology of the disease. Evaluating goal-setting measures is challenging, and there is limited evidence for their psychometric properties.

Aim: (1) To describe what goal-setting outcomes have been used in this population; (2) To evaluate their validity, reliability, and feasibility in RCTs.

Method: We systematically reviewed studies that utilised goal-setting outcome measures for people living dementia or their family carers. We adapted a risk of bias and quality rating system based on the COSMIN guidelines to evaluate the measurement properties of outcomes when used within RCTs.

Results: Thirty studies meeting inclusion criteria used four different goal-setting outcome measures: Goal Attainment Scaling (GAS), Bangor Goal Setting Interview (BGSI), Canadian Occupational Performance Measure (COPM) and Individually Prioritized Problems Assessment (IPPA); other papers have reported study-specific goal-setting attainment systems. Only GAS has been used as an outcome over periods greater than 9 months (up to a year). Within RCTs there was moderate quality evidence for sufficient content validity and construct validity for GAS, COPM and the BGSI. Reliability was only assessed in one RCT (using BGSI); in which two raters reviewed interview transcripts to rate goals with excellent inter-rater reliability. Feasibility was reported as good across the measures with a low level of missing data.

Conclusion: We found moderate quality evidence for good content and construct validity and feasibility of GAS, BGSI and COPM. While more evidence of reliability of these measures is needed, we recommend that future trials consider using individualised goal setting measures, to report the effect of interventions on outcomes that are most meaningful to people living with dementia and their families.

背景:个性化的目标设定结果测量方法可以有效反映痴呆症患者和家庭照顾者在高度异质性的疾病症状中对生活质量领域的不同优先考虑。目的:(1)描述哪些目标设定结果被用于该人群;(2)评估其有效性、可靠性以及在 RCT 中的可行性:我们系统回顾了针对痴呆症患者或其家庭照顾者使用目标设定结果测量的研究。我们根据 COSMIN 指南调整了偏倚风险和质量评级系统,以评估 RCT 中使用的结果测量特性:符合纳入标准的 30 项研究使用了四种不同的目标设定结果测量方法:目标达成量表 (GAS)、班戈目标设定访谈 (BGSI)、加拿大职业表现测量 (COPM) 和个体优先问题评估 (IPPA);其他论文报告了针对特定研究的目标设定达成系统。只有 GAS 被用作超过 9 个月(最长一年)的结果。在 RCT 中,有中等质量的证据表明 GAS、COPM 和 BGSI 具有足够的内容效度和结构效度。可靠性仅在一项 RCT(使用 BGSI)中进行了评估;在这项 RCT 中,两名评分者审查了访谈记录,对目标进行评分,评分者之间的可靠性极佳。据报告,所有测量方法的可行性都很好,数据缺失率较低:我们发现中等质量的证据表明,GAS、BGSI 和 COPM 具有良好的内容和结构效度及可行性。虽然还需要更多证据来证明这些测量方法的可靠性,但我们建议未来的试验考虑使用个性化目标设定测量方法,以报告干预措施对痴呆症患者及其家人最有意义的结果的影响。
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引用次数: 0
Strategies and factors to enhance active participation of family caregivers of people with dementia in psychoeducation: A scoping review. 促进痴呆症患者家庭照顾者积极参与心理教育的策略和因素:范围综述。
Pub Date : 2024-02-01 Epub Date: 2023-12-13 DOI: 10.1177/14713012231220231
Hoi Man Chan, Ken Hok Man Ho, Rebecca Cho Kwan Pang, Helen Yue Lai Chan

Psychoeducation with an active participation component is effective in facilitating family caregivers of people living with dementia to learn about the disease and gain relevant caregiving skills. However, research into the best strategies to promote active participation has received little attention, and the factors hindering active participation are also unknown. Therefore, the nine-stage framework of the Joanna Briggs Institute methodology for scoping reviews was adopted to map and identify information about the active participation of family caregivers of people living with dementia in psychoeducation. The search criteria focused on identifying primary research studies and grey literature relevant to psychoeducation with active participation that had the family caregivers of community dwelling people living with dementia as the target population. Two reviewers independently screened and selected items from the literature. Content analysis was conducted to thematically synthesise strategies mentioned in 29 articles published from 2011 and 2021. Content analysis revealed six strategies that promoted active participation: (1) the involvement of interventionist and qualifications; (2) the teaching and learning methods used to conduct psychoeducation with active participation; (3) tailoring the contents and formats to the experiences, preferences, and resources of the caregivers; (4) collaborating with caregivers; (5) facilitating sharing and support between peers; and (6) providing experiential learning opportunities. Two factors hindering active caregiver participation were negative caregiver emotions and cultural taboos. This review offers ideas for evidence-based practices that can be used by health and social care providers when planning psychoeducation with active participation for the family caregivers of people living with dementia.

具有积极参与成分的心理教育能有效地帮助痴呆症患者的家庭照顾者了解疾病并获得相关的照顾技能。然而,有关促进主动参与的最佳策略的研究却鲜有人问津,阻碍主动参与的因素也不为人知。因此,我们采用了乔安娜-布里格斯研究所(Joanna Briggs Institute)范围界定综述方法中的九阶段框架,来绘制和识别有关痴呆症患者家庭照顾者积极参与心理教育的信息。检索标准侧重于识别与积极参与心理教育相关的、以社区痴呆症患者的家庭照顾者为目标人群的初级研究和灰色文献。两位审稿人独立筛选了文献中的项目。我们对 2011 年至 2021 年间发表的 29 篇文章中提到的策略进行了内容分析和专题综合。内容分析揭示了促进积极参与的六种策略:(1)干预者的参与和资格;(2)在积极参与的情况下开展心理教育的教学方法;(3)根据护理者的经验、偏好和资源调整内容和形式;(4)与护理者合作;(5)促进同伴之间的分享和支持;以及(6)提供体验式学习机会。阻碍照顾者积极参与的两个因素是照顾者的负面情绪和文化禁忌。本综述为健康和社会护理提供者在为痴呆症患者的家庭照顾者规划积极参与的心理教育时提供了以证据为基础的实践思路。
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Dementia (London, England)
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