Integration of Health Information Technology and Promotion of Personhood in Family-Centered Dementia Care

目前，大约580万美国人患有阿尔茨海默病和相关痴呆症（ADRD）， 由1 600万家庭成员、朋友或其他无报酬的照顾者照顾。沟通障碍是 常见于ADRD患者，是由于与ADRD相关的各种症状，包括 (but不限于）各种类型的原发性进行性失语症、记忆丧失、单词检索障碍，以及 注意力下降。对于ADRD患者，这些缺陷可能导致许多不良结局， 如抑郁症、社会孤立、情绪和行为障碍以及过早的机构化。 沟通不足也给已经很复杂的医疗和临床护理带来了挑战。我们 一个团队先前开发并测试了一种名为CareHeroes（CH）的信息技术（IT）干预 帮助护理人员应对常见的护理挑战并改善临床沟通的应用程序 ADRD护理人员和提供者之间的关系。该团队已经成功地将CH整合到临床护理中， 记忆诊所，并将CH翻译成西班牙语。拟议的项目建立在以前的工作基础上， 修改CH以包括依赖于触摸屏的辅助替代通信（AAC）设备 技术，以增加ADRD患者对其日常护理偏好的沟通， 经验和习惯。这个新的界面是可定制的，并在AAC和 痴呆症患者使用触摸屏。基本上，CH AAC将补偿这些人的 通过使用照片，图形和文字来促进与人的接触， ADRD，促进人格，并为提供者提供实时跟踪的行为趋势， 早期发现、干预和监测社区居住的老年人。该研究有两个具体的 目的：（1）为现有的IT干预（CH）开发一种新的电子AAC界面， 痴呆症患者在与护理人员沟通日常护理偏好时; 习惯和行为（例如，睡眠质量，食欲，日常活动）与参与其护理的提供者;（2） 检查的影响，并进行试点研究，评估生物心理社会的结果，120个三合会（人 痴呆/照顾者/提供者）利用CH3.0干预作为12 个月三合会将从两个记忆诊所（迈阿密，亚拉巴马），我们已经整合招募 将当前版本的CH纳入护理，供护理人员和提供者使用。这些诊所为几个 弱势ADRD人群（例如，非裔美国人，西班牙裔，农村居民）。措施将 在基线、6个月和12个月时进行，重点关注社会心理和沟通/参与 我们将在12个月的研究中跟踪所有CH3.0用户的行为。项目 鉴于基础设施已经建立，设计高度可行且具有成本效益 该团队目前资助的（AHRQ R21 HS 026571 - 9/18- 09/20）研究。

Currently, approximately 5.8 million Americans have Alzheimer’s disease and related dementias (ADRD) and are cared for by 16 million family members, friends or other unpaid caregivers. Communication deficits are common among persons with ADRD and are due to a variety of symptoms associated with ADRD, including (but not limited to) various types of primary progressive aphasia, memory loss, word-retrieval anomia, and decreased attention span. For the persons with ADRD, these deficits can lead to a number of poor outcomes, such as depression, social isolation, mood and behavioral disturbances, and premature institutionalization. Communication deficits also pose challenges to caregiving and clinical care, which is already complex. Our team has previously developed and tested an information technology (IT) intervention, called CareHeroes (CH) app that assists caregivers with common caregiving challenges and to improve clinical communication between ADRD caregivers and providers. The team has successfully integrated CH into clinical care at two memory clinics and have translated CH into Spanish. The proposed project builds on this previous work by modifying CH to include an Assistive Alternative Communication (AAC) device that relies on touchscreen technology to increase communication by the persons with ADRD about their daily care preferences, experiences, and habits. This new interface is customizable and grounded in evidence on AAC and touchscreen-use by persons with dementia. Essentially, the CH AAC would compensate for the persons’ communication deficits by using photographs, graphics and text to promote engagement of the person with ADRD, promote personhood, and offer providers access to real-time, tracked behavioral trends that support early detection, intervention, and monitoring of community dwelling older adults. The study has two Specific Aims: (1) Develop a novel, electronic AAC interface for an existing IT intervention (CH) that assists the person with dementia in communicating their daily care preferences with caregivers; and communicate everyday habits and behaviors (e.g., sleep quality, appetite, daily activities) with providers involved in their care; (2) Examine the impact and conduct a pilot study that evaluates biopsychosocial outcomes of 120 triads (person with dementia/ caregivers/providers) utilizing the CH3.0 intervention as an adjunct to care and caregiving for 12 months. Triads will be recruited from two memory clinics (Miami, Alabama) where we have already integrated the current version of CH into care for use by caregivers and providers. These clinics serve several disadvantaged ADRD populations (e.g., African American, Hispanic, rural-dwelling). Measures will be administered at baseline, 6 month, and 12 months and focus on psychosocial and communication/engagement among members of the triad and we will track all CH3.0 user actions for the 12 month study. The project design is highly feasible and cost efficient, given that the infrastructure has already been established through the team’s currently funded (AHRQ R21 HS026571- 9/18- 09/20) study.