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

目前，约有580万美国人患有阿尔茨海默病和相关痴呆(ADRD)和 由1600万家庭成员、朋友或其他无偿照顾者照顾。沟通障碍是 在ADRD患者中很常见，原因是与ADRD有关的各种症状，包括 (但不限于)各种类型的原发性进行性失语症、记忆力丧失、单词提取障碍，以及 注意力持续时间缩短。对于患有ADRD的人来说，这些缺陷可能会导致许多不良结果， 例如抑郁、社会孤立、情绪和行为障碍，以及过早的制度化。 沟通障碍也给护理和临床护理带来了挑战，这已经很复杂了。我们的 团队之前开发并测试了一种名为CareHeroes(CH)的信息技术(IT)干预 帮助照顾者解决常见护理挑战并改善临床沟通的应用程序 在ADRD照顾者和提供者之间。该团队已成功地将CH整合到两个月的临床护理中 记忆诊所，并已将CH翻译成西班牙语。拟议的项目建立在此之前的工作基础上， 修改CH以包括依赖触摸屏的辅助替代通信(AAC)设备 技术，以增加ADRD患者关于其日常护理偏好的沟通， 经历和习惯。这一新界面是可定制的，并基于AAC和 触摸屏-痴呆症患者使用。从本质上讲，CHAAC将补偿这些人的 通过使用照片、图形和文本来促进人与 ADRD，提升个性，并为提供商提供实时、跟踪的行为趋势，以支持 社区居住老年人的早期发现、干预和监测。这项研究有两个具体的 目标：(1)为现有的IT干预(CH)开发一种新颖的电子AAC接口，以帮助个人 痴呆症患者与照顾者交流日常护理偏好；以及每天交流 习惯和行为(例如，睡眠质量、食欲、日常活动)；(2) 检查影响并进行试点研究，评估120名三合会(个人)的生物、心理和社会后果 与痴呆症/照顾者/提供者)利用CH3.0干预作为护理和护理的辅助工具 月份。三合会将从两个记忆诊所(迈阿密，阿拉巴马州)招募，我们已经在那里整合了 将当前版本的CH转换为CARE，供护理人员和提供者使用。这些诊所为几个 弱势ADRD人口(例如，非裔美国人、西班牙裔、农村居民)。措施将是 在基线、6个月和12个月时实施，重点放在心理社会和沟通/参与上 在12个月的研究中，我们将跟踪所有CH3.0用户的行为。该项目 考虑到基础设施已经通过以下方式建立，设计是高度可行和具有成本效益的 该团队目前资助的研究(AHRQ R21 HS026571-9/18-09/20)。

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.