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

在以家庭为中心的痴呆症护理中整合健康信息技术和提升人格

• 批准号: 10665602
• 负责人: ELLEN Leslie BROWN
• 金额: $ 30.37万
• 依托单位: FLORIDA INTERNATIONAL UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-15 至 2025-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10665602
• 关键词: Address; African American; Alabama; Alzheimer' s disease related dementia; American; Anomia; Aphasia; Attention; Attentional deficit; Behavior; Behavioral; Caregiver support; Caregivers; Caring; Clinic; Clinical; Clinical assessments; Collection; Communication; Communities; Compensation; Complex; Computer software; Conflict (Psychology); Data; Decision Making; Dementia; Dementia caregivers; Depression screen; Desire for food; Devices; Disadvantaged; Early Diagnosis; Education; Elderly; Electronics; Family; Family member; Feedback; Friends; Funding; Future; Goals; Habits; Health Personnel; Hispanic; Home; Information Technology; Infrastructure; Institutionalization; Interactive Communication; Internet; Interpersonal Relations; Intervention; Knowledge; Measures; Medical; Memory; Memory Loss; Mental Depression; Mental Health; Monitor; Moods; Multimedia; Outcome; Patients; Periodicals; Personhood; Persons; Pilot Projects; Population; Primary Progressive Aphasia; Provider; Quality of Care; Quality of life; Recommendation; Regimen; Research; Retrieval; Secure; Self Efficacy; Self-Help Devices; Services; Sleep; Social isolation; Technology; Testing; Text; Time; Training; Translating; United States Agency for Healthcare Research and Quality; Work; alternative communication; associated symptom; bilingualism; biopsychosocial; care outcomes; care preference; care providers; caregiving; clinical care; clinical decision-making; communication device; cost efficient; data integration; dementia care; dementia caregiving; design; disability; dosage; experience; flexibility; health information technology; improved; member; mobile application; novel; person centered; premature; provider communication; psychosocial; recruit; rural residence; skills; sleep quality; theories; touchscreen; trend

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.

目前，大约有580万美国人患有阿尔茨海默氏病和相关痴呆症（ADRD）和 由1600万家庭成员，朋友或其他未付护理人员照顾。沟通缺陷是 在ADRD的人中很常见，并且是由于与ADRD相关的多种症状引起的 （但不限于）各种类型的主要进行性失语症，记忆丧失，文字回答异常和 注意力跨度下降。对于ADRD的人，这些定义可能会导致许多不良结果， 例如抑郁，社会隔离，情绪和行为障碍以及早产的制度化。 沟通也将挑战构成了已经很复杂的护理和临床护理。我们的 团队以前已经开发并测试了信息技术（IT）干预措施，称为Careheroes（CH） 协助护理人员面临共同护理挑战并改善临床交流的应用程序 在ADRD护理人员和提供者之间。该团队已成功将CH集成到两个 记忆诊所并将CH转化为西班牙语。拟议的项目以先前的工作为基础 修改CH以包括依赖触摸屏的辅助替代通信（AAC）设备 通过ADRD对他们的日常护理偏好的人进行沟通的技术， 经验和习惯。该新界面是可自定义的，并基于AAC和 痴呆症患者使用触摸屏。本质上，CH AAC会补偿这些人的 通过使用照片，图形和文本来促进该人的参与，以防御沟通 ADRD，促进人格，并为提供者提供实时的，跟踪的行为趋势，以支持 对社区居住老年人的早期发现，干预和监测。该研究有两个特定 目的：（1）为现有的IT干预（CH）开发一种小说的电子AAC界面，以帮助该人 痴呆症与护理人员传达其日常护理偏好；每天交流 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） 检查并进行一项试点研究，该研究评估了120个三合会的生物心理社会结局（人 使用痴呆症/护理人员/提供者）使用CH3.0干预作为12岁的护理和护理的辅助 月份。三合会将从我们已经整合的两个记忆诊所（阿拉巴马州迈阿密）招募 当前版本的CH护理供护理人员和提供商使用。这些诊所服务了几个 处境不利的阿德德人口（例如，非裔美国人，西班牙裔，粗糙的居民）。措施将是 在基线，6个月和12个月时管理，专注于社会心理和沟通/参与 在三合会的成员中，我们将跟踪12个月研究的所有CH3.0用户行动。项目 鉴于基础设施已经通过 该团队目前资助（AHRQ R21 HS026571- 9/18-09/20）研究。

项目成果

Developing a Memory and Communication App for Persons Living With Dementia: An 8-Step Process.

• DOI: 10.2196/44007
• 发表时间: 2023-03-15
• 期刊: JMIR AGING
• 影响因子: 4.9
• 作者: Brown, Ellen L.;Ruggiano, Nicole;Allala, Sai Chaithra;Clarke, Peter J.;Davis, Debra;Roberts, Lisa;Framil, Victoria C.;Munoz, Mariateresa Teri Hernandez;Hough, Monica Strauss;Bourgeois, Michelle S.
• 通讯作者: Bourgeois, Michelle S.

Integration of Health Information Technology and Promotion of Personhood in Family-Centered Dementia Care: Intervention Trial.

• DOI: 10.3928/19404921-20210825-02
• 发表时间: 2021-09
• 期刊: RESEARCH IN GERONTOLOGICAL NURSING
• 影响因子: 1.6
• 作者: Brown, Ellen L.;Ruggiano, Nicole;Roberts, Lisa;Clarke, Peter J.;Davis, Debra Lee;Agronin, Marc;Geldmacher, David S.;Hough, Monica Strauss;Munoz, Mariateresa (Teri) H.;Framil, C. Victoria;Yang, Xin
• 通讯作者: Yang, Xin