dementia dyads

  • 文章类型: Journal Article
    痴呆症患者(PwD)及其护理伙伴(CP)可能在情绪调节方面有困难,情绪调节的个体差异可能与PwD的神经精神症状有关。本研究探讨了PwD的情绪调节困难是否存在自我意识,以及CP的情绪调节是否与PwD的神经精神症状有关,潜在的揭示偏见或人际效应。
    我们使用了来自愿望结果障碍计划研究的数据,样本为45PwD及其配偶CP(n=90个个体)。使用多元线性回归模型来研究PwD中CP报告的神经精神症状与两个二元成员的情绪调节自我报告之间的关联。社会人口统计学和健康因素的净值。对每种神经精神亚证和情绪调节困难的每个领域进行了单独分析。
    在PwD中,神经精神症状的严重程度增加与情绪调节的困难增加相关(β=1.23,p<0.05),但不是CP在情绪调节方面的困难。当CP在PwD中报告更严重的神经精神症状时,普华永道报告说他们很难接受情绪,控制冲动,目标导向的行为,并获得情绪调节策略,但不是在情感意识和澄清中。多动症和精神病亚综合征的代理报告与PwD自我报告的情绪调节困难显着相关。
    PwD报告了痴呆早期的情绪调节困难。代理报告的神经精神症状可能反映了PwD的情绪调节能力,并且不会因CP在情绪调节方面的困难而产生偏见。
    UNASSIGNED: People with dementia (PwD) and their care partners (CP) may have difficulties in emotion regulation, and individual differences in emotion regulation may be related to PwD\'s neuropsychiatric symptoms. This study explores whether there is self-awareness of PwD\'s difficulties in emotion regulation and whether CP\'s emotion regulation relates to the PwD\'s neuropsychiatric symptoms, potentially revealing bias or interpersonal effects.
    UNASSIGNED: We used data from the Wish Outcome Obstacle Plan Study with a sample of 45 PwD and their spousal CP (n = 90 individuals). Multivariate linear regression models were used to investigate the associations between the CP-reported neuropsychiatric symptoms in PwD and self-reports of emotion regulation in both dyad members, net of sociodemographic and health factors. Separate analyses were conducted for each neuropsychiatric subsyndrome and each domain of difficulties in emotion regulation.
    UNASSIGNED: Increasing severity of neuropsychiatric symptoms was associated with higher difficulties in emotion regulation in PwD (ß = 1.23, p < 0.05), but not with CP\'s difficulties in emotion regulation. When CP reported more severe neuropsychiatric symptoms in PwD, PwD reported that they had difficulties in accepting emotions, controlling impulses, goal-directed behaviors, and accessing emotion regulation strategies, but not in emotion awareness and clarification. Proxy-reports of hyperactivity and psychosis subsyndromes are significantly related to PwD\'s self-reported difficulties in emotion regulation.
    UNASSIGNED: PwD reported difficulties in emotion regulation at the early stage of dementia. Proxy-reported neuropsychiatric symptoms may capture PwD\'s emotion regulation capability and not be biased by CP\'s difficulties in emotion regulation.
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  • 文章类型: Journal Article
    目的:本研究的目的是确定在两个初级保健机构中为二元组(患有痴呆症或轻度认知障碍的患者和家庭照顾者)提供结构化诊断后信息和支持计划的可行性。
    方法:由Bowen可行性框架指导的两阶段解释性混合方法,重点是可接受性,实施,适应,五部分计划的整合和效力。在第一阶段,该计划对二元计划接受者自我效能感的定量影响,生活质量,测量了二元关系和护理量。在第2阶段,归纳内容分析的重点是该计划的护士和二元参与者的经验。对定量和定性数据进行了审查,以得出可行性的每个要素。
    方法:招募了四名在参与中心工作的注册护士,培训为方案促进者,并支持实施方案。在各自的初级保健诊所就诊的符合条件的双子党被邀请参加该计划,并在三个时间点完成调查:招募,方案后和3个月的后续行动。与二元组和方案主持人进行了方案后半结构化访谈。
    结果:有29个二元组完成了该计划;大多数是配偶二元组。事实证明,该计划被保留率和完成率高的二元组合所接受。该方案的实施和纳入通常做法归因于护士作为方案促进者的动机和能力。关于方案效力,大多数二元组合报告说,他们为未来做好了更好的准备,并与家庭成员分享了他们在计划期间制定的计划。
    结论:实施结构化的信息和支持计划是可行的,但是可持续性需要进一步调整或增加人力资源,以保持计划的忠诚度。未来的研究应考虑选择对痴呆症患者的独特需求敏感的疗效措施,并将随访时间延长至6个月。
    结论:这项研究确定了注册护士为患有早期痴呆或轻度认知障碍的患者及其在初级护理机构中的非正式护理人员提供诊断后信息和支持计划的可行性。护士作为方案促进者的工作动机和能力确保了方案融入日常工作,但随着时间的推移,这被认为是不可持续的。家庭照顾者dyads报告了切实的结果,并获得了与家人和朋友分享诊断并寻求帮助的信心。这项研究的结果可用于为临床试验提供指导,以调查结构化信息和支持计划在初级保健环境中的有效性。
    作者坚持EQUATORSTROBE声明。
    一家公立医院记忆诊所和普通医疗实践参与了项目设计,研究协议开发和支持的实施。
    OBJECTIVE: The aim of the study was to establish the feasibility of delivering a structured post-diagnosis information and support program to dyads (persons living with dementia or mild cognitive impairment and family carers) in two primary care settings.
    METHODS: A two-phase explanatory mixed-method approach guided by the Bowen Feasibility Framework focused on acceptability, implementation, adaptation, integration and efficacy of a five-part programme. In phase 1, the quantitative impact of the programme on the dyadic programme recipients\' self-efficacy, quality of life, dyadic relationship and volume of care was measured. In phase 2, inductive content analysis focused on nurse and dyad participant experiences of the programme. Quantitative and qualitative data were reviewed to conclude each element of feasibility.
    METHODS: Four registered nurses working within the participating sites were recruited, trained as programme facilitators and supported to deliver the programme. Eligible dyads attending the respective primary health clinics were invited to participate in the programme and complete surveys at three time points: recruitment, post-programme and 3-month follow-up. Post-programme semi-structured interviews were conducted with dyads and programme facilitators.
    RESULTS: Twenty-nine dyads completed the program; the majority were spousal dyads. The programme proved acceptable to the dyads with high retention and completion rates. Implementation and integration of the programme into usual practice were attributed to the motivation and capacity of the nurses as programme facilitators. Regarding programme efficacy, most dyads reported they were better prepared for the future and shared the plans they developed during the programme with family members.
    CONCLUSIONS: Implementing a structured information and support programme is feasible, but sustainability requires further adaptation or increased staff resources to maintain programme fidelity. Future research should consider selecting efficacy measures sensitive to the unique needs of people living with dementia and increasing follow-up time to 6 months.
    CONCLUSIONS: This study established the feasibility of registered nurses delivering a post-diagnosis information and support programme for people living with early-stage dementia or mild cognitive impairment and their informal carers in primary care settings. The motivation and capacity of nurses working as programme facilitators ensured the integration of the programme into usual work, but this was not considered sustainable over time. Family carer dyads reported tangible outcomes and gained confidence in sharing their diagnosis with family and friends and asking for assistance. Findings from this study can be used to provide direction for a clinical trial investigating the effectiveness of the structured information and support programme in the primary care setting.
    UNASSIGNED: The authors have adhered to the EQUATOR STROBE Statement.
    UNASSIGNED: A public hospital memory clinic and general medical practice participated in project design, study protocol development and supported implementation.
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  • 文章类型: Journal Article
    背景:识别患有痴呆症的个体及其非正式护理人员的二元亚组可以帮助设计有效的定制支持。在之前的德国研究中,我们通过应用潜在类别分析(LCA)确定了6个痴呆二分亚组.结果显示社会人口统计学异质性以及医疗保健结果的差异(即,生活质量,健康状况,照顾者负担)亚组之间。这项研究的目的是确定先前分析的二元亚组是否可以在相似但不同的荷兰样本中复制。
    方法:对来自COMPAS研究的基线数据应用LCA3步程序,前瞻性队列研究。LCA是一种统计方法,用于根据群体在一组分类变量上的答案模式来识别群体中的异质亚组。数据包括509名主要患有轻度至中度痴呆症的社区生活个人及其非正式护理人员。叙事分析用于比较原始研究与复制研究的潜在类别结构。
    结果:确定了六个不同的痴呆二元亚组:“与年轻非正式照顾者的成人-儿童-父母关系”亚组(31.8%),“与老年女性非正式照顾者的夫妇”组(23.1%),“与中年非正式照顾者的成人-儿童-父母关系”组(14.2%),“夫妇与中年女性非正式照顾者”组(12.4%),“与老年男性非正式照顾者的夫妇”组(11.2%)和“与中年男性非正式照顾者的夫妇”组(7.4%)。在夫妻中,痴呆症患者的生活质量比在成年子女关系中更好。女性非正式护理人员与男性痴呆症患者在夫妻关系中生活在一起的亚组报告了护理人员最糟糕的健康状况。在夫妻关系中,年龄较大的女性非正式照顾者的亚组报告说,对身心健康的负担最严重。在两项研究中,具有六个子组的模型最适合数据。尽管两项研究的亚组之间出现了实质性的相似性,相当大的差异也很明显。
    结论:这项复制研究证实了非正式痴呆二组的存在。观察到的亚组之间的差异为非正式护理人员和痴呆症患者提供更量身定制的医疗保健服务提供了有用的贡献。此外,它强调了二元观点的相关性。为了促进复制研究并提高证据的有效性,跨研究收集的数据的标准化将是有益的.
    BACKGROUND: The identification of dyadic subgroups of individuals living with dementia and their informal caregivers can help to design effective tailored support. In a previous German study, we identified six dementia dyad subgroups by applying Latent Class Analysis (LCA). Results showed sociodemographic heterogeneity as well as differences in health care outcomes (i.e., quality of life, health status, caregiver burden) between subgroups. The objective of this study is to determine if the dyad subgroups from the previous analysis can be replicated in a similar but distinct Dutch sample.
    METHODS: A LCA 3-step procedure was applied to baseline data from the COMPAS study, a prospective cohort study. LCA is a statistical approach used to identify heterogeneous subgroups within populations based on their pattern of answers on a set of categorical variables. Data comprises 509 community-living individuals with predominantly mild to moderate dementia and their informal caregivers. A narrative analysis was used to compare latent class structures of the original versus the replication study.
    RESULTS: Six distinct dementia dyad subgroups were identified: A subgroup of \"adult-child-parent relation with younger informal caregiver\" (31.8%), a \"couple with female informal caregiver of older age\" group (23.1%), an \"adult-child-parent relation with middle-aged informal caregiver\" group (14.2%), a \"couple with middle-aged female informal caregiver\" group (12.4%), a \"couple with older male informal caregiver\" group (11.2%) and a \"couple with middle-aged male informal caregiver\" group (7.4%). Quality of life of individuals with dementia was rated better in couples than in adult-child-relationships. Worst health for caregivers was reported by subgroups with female informal caregivers living together with male individuals with dementia in couple relationships. A subgroup with older female informal caregivers in couple relationships report the most severe burden on physical and mental health. In both studies, a model with six subgroups fitted the data best. Although substantive similarities between the subgroups of both studies appeared, considerable differences are also evident.
    CONCLUSIONS: This replication study confirmed the existence of informal dementia dyad subgroups. The observed differences between the subgroups provide useful contributions for a more tailored health care services for informal caregivers and individuals living with dementia. Furthermore, it underlines the relevance of dyadic perspectives. To facilitate replication studies and increase the validity of evidence, a standardization of collected data across studies would be beneficial.
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  • 文章类型: Journal Article
    OBJECTIVE: To explore the impact of early-stage dementia on care recipient/carer dyads\' confidence or belief in their capacity to manage the behavioural and functional changes associated with dementia and to access appropriate support networks.
    BACKGROUND: Living with dementia has predominantly been explored from the carer perspective and focused on the stress and burden of supporting a person with dementia. There has been a shift towards a more positive discourse to accommodate the role of self-efficacy in supporting self-management by people living with dementia. However, little has been reported on the dyadic experience of self-efficacy in managing life with dementia.
    METHODS: A qualitative study using an interpretive descriptive approach. Semi-structured interviews were conducted with 13 dyads in the early stages of dementia. The collected data underwent a process of thematic analysis. The study followed the COnsolidated criteria for REporting Qualitative research (COREQ) checklist.
    RESULTS: Dyadic adjustment to dementia was dynamic, involving shifts between loss and adaptation. Threats to self-efficacy, declining autonomy and stigma, were significant causes of concern for both members of the dyad. Dyadic self-efficacy was demonstrated through recognition of and adaptation to dementia-related changes and development of coping strategies to integrate impairment into everyday life.
    CONCLUSIONS: Solution-focused approaches that improve knowledge and skills enable the dyad to adjust. The considerable impact of stigma on self-efficacy indicates that supportive disclosure strategies developed in mental health may also have a role to play in dementia interventions.
    CONCLUSIONS: Nurses play a significant role in advising and supporting care recipient/carer dyads with dementia, and a better understanding of the dyadic perspective provides them with essential information to support self-management. A proactive approach including information and support, offered at the beginning of the condition/care trajectory, may have the potential to delay progression into more dependent stages.
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