Caregiver Health and Attitudes in the Era of Therapeutic Discovery

治疗发现时代的护理人员健康和态度

基本信息

项目摘要

PROJECT SUMMARY—Caregiver Health and Attitudes in the Era of Therapeutic Discovery (Project E) In the era of frontotemporal dementia (FTD) therapeutic discovery, the primary focus will be on people with dementia (PWDs). However, the health and well-being of family and friends who serve as informal caregivers (CGs) will also be a major concern. CGs provide essential support for maintaining PWDs’ health and compensating for their functional declines, which differ considerably in FTD, Alzheimer’s disease (AD), and other dementias. Over time, these declines create additional burden that may adversely affect CGs’ health and, thus, their ability to provide high-quality care. CGs currently face difficult decisions about PWD participation in clinical trials. They will increasingly need to make decisions about using new therapeutics and be asked to help monitor PWD disease progression, treatment compliance, and treatment efficacy. Thus, the argument for integrating CGs for PWDs with a wide range of diagnoses into dementia research is compelling. Approach. From the new participants entering the PPG over the five-year project period, we will recruit a subsample of LMM PWD-CG dyads and NO functionally intact controls selected to maximize diversity in CG ethnicity, sex, and socioeconomic status (SES), and PWD diagnosis. Emotional functioning in CGs and PWD- CG dyads will be assessed initially in our Berkeley laboratory and repeated at two annual follow-ups conducted in participants’ homes. Combining these data with data from other PPG cores and projects, we will address two aims. Aim I: CG health. We will explore: (a) Trajectories. Characterize CG health trajectories and influences of moderators (i.e., PWD diagnosis; CG sex, ethnicity, and genetics); (b) Predictors. Determine associations between changes in PWD health and functioning, CG functioning, and external resources and changes in CG health and influences of moderators; (c) Mediator. Determine how changes in the PWD-CG relationship explain associations between predictors and changes in CG health; and (d) Optimal measures. Determine optimal measures (observational measures; self, clinician, and informant ratings) for predicting changes in CG health. Aim L: CG attitudes towards trials and therapeutics. Paralleling Aim L, we will explore: (a) Trajectories. Characterize CG attitude trajectories and influences of moderators (i.e., PWD diagnosis; CG sex, ethnicity, genetics); (b) Predictors. Determine associations between changes in PWD health and functioning, CG functioning, and external resources and changes in CG attitudes and influences of moderators; (c) Mediator. Determine how changes in the PWD-CG relationship explain associations between predictors and changes in CG attitudes; and (d) Optimal measures. Determine optimal measures for predicting changes in CG attitudes toward trials and therapeutics. Significance. Research findings from Project E can inform future efforts to assess risk in CGs and design interventions to protect CG and PWD health and increase engagement in trials and therapeutics.
项目总结-护理人员的健康和态度在治疗发现的时代(项目E) 在额颞叶痴呆(FTD)治疗发现的时代,主要关注的是患有 痴呆症(PWDs)。然而,作为非正式照顾者的家人和朋友的健康和福祉 (CGs)也将是一个主要问题。社区团体为维持残疾人士的健康提供必要的支援, 补偿他们的功能下降,这在FTD,阿尔茨海默病(AD)和其他疾病中有很大不同。 痴呆症随着时间的推移,这些下降会产生额外的负担,可能会对CG的健康产生不利影响,因此, 提供高质量护理的能力。CG目前面临着关于PWD参与临床的困难决定 审判他们将越来越需要做出使用新疗法的决定,并被要求帮助监测 PWD疾病进展、治疗依从性和治疗疗效。因此,整合CG的论点 对于患有各种痴呆症的残疾人来说,研究是引人注目的。 Approach.在为期五年的项目期间,我们将从进入PPG的新参与者中招募一名 选择LMM PWD-CG二联体和NO功能完整对照的子样本,以最大化CG的多样性 种族、性别和社会经济地位(SES),以及PWD诊断。CG和PWD的情绪功能- CG二联体将在我们的伯克利实验室进行初步评估,并在每年进行的两次随访中重复进行 在参与者的家中。将这些数据与其他PPG核心和项目的数据相结合,我们将解决两个问题 目标。 目标一:CG健康。我们将探讨:(a)轨迹。描述CG健康轨迹和影响 调节器(即,PWD诊断; CG性别、种族和遗传学);(B)预测因子。确定关联 PWD健康和功能变化、CG功能变化以及外部资源和CG变化之间的关系 主持人的健康和影响;(c)调解人。确定PWD-CG关系的变化如何解释 CG健康的预测因素和变化之间的关联;以及(d)最佳措施。确定最佳 测量(观察性测量;自我,临床医生和线人评级)预测CG健康的变化。 目的L:CG对试验和治疗的态度。除了目标L,我们将探讨:(a)轨迹。 描述CG态度轨迹和主持人的影响(即,PWD诊断; CG性别、种族, 遗传学);(B)预测因子。确定PWD健康和功能变化之间的关联,CG 运作,外部资源和变化,在CG的态度和影响的主持人;(c)调解人。 确定PWD-CG关系的变化如何解释预测因子与 CG态度;(d)最佳措施。确定预测CG态度变化的最佳措施 临床试验和治疗方法 意义项目E的研究结果可以为未来评估CG和设计风险的工作提供信息 保护CG和PWD健康的干预措施,并增加对试验和治疗的参与。

项目成果

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