To reduce the burden of caregiving on health outcomes of midlife women: Asian American family caregivers of persons living with Alzheimer'sdisease

目前，在美国，有580万人患有阿尔茨海默氏症，随后约有1500万人 百万家庭照顾者。照护对老年人家庭照顾者健康结局的广泛负面影响 据报道，患有阿尔茨海默病(PLAD)的人。此外，种族/少数民族妇女 包括亚裔美国中年女性在内，与她们的中年女性相比，更有可能遭受照顾负担 主要是由于他们对阿尔茨海默病和照料的文化态度(例如，耻辱， 家庭义务、妇女作为照顾者)。减轻护理负担对中年健康结果的影响 作为PLAD(MWPLAD)家庭照顾者的妇女，提供越来越多的干预措施 已经开发和使用了信息和支持/指导。然而，大多数干预措施都有 很少能成功实现他们的目标，辍学率一直很高。一个主要原因可能是 很少在设计干预措施时考虑照顾者与阿尔茨海默氏症相关的文化态度 疾病和照顾。例如，由于文化上对讨论痴呆症犹豫不决，亚裔美国人往往不会 分享他们的护理经验，包括他们沉重的护理负担和随后的心理 和身体症状，直到他们得到严重的/严重的问题/问题，无法再容忍。另外， 大多数干预措施要求MWPLAD在照顾者前往和 参加干预活动。随着计算机和移动技术的进步，一个基于技术的程序可以 提供高度创新和有效的方式(无需亲自到场)来提供信息和 在考虑他们的文化态度的同时，指导/支持MWPLAD。因此，根据班杜拉的理论， 研究小组开发了第一个基于技术的信息和指导/支持计划，即 为亚裔美国中年女性量身定做，她们是PLAD(TACAD)的家庭照顾者，同时考虑她们的 文化态度。TACAD使用一款采用虚拟现实技术的Web应用程序，并在 它的设计和交付方法克服了现有项目中的缺点(包括文化定制 以及使用机器学习方法的自适应功能)。这两个阶段的目的是混合- 方法：探索性研究初步评价TACAD在改善亚裔美国人健康结局中的作用 作为阿尔茨海默病(AACA)患者家庭照顾者的中年女性及其护理 收件人。具体目标是：(A)通过专家审查和可用性测试对TACAD进行定性评估； 和(B)定量评估TACAD在改善AACA和AACA健康结局方面的初步效果 他们的护理对象。第一阶段包括对PLAD家庭照顾者中的5名专家进行专家审查，并 在10个AACA中进行可用性测试。阶段2采用随机重复测量前测/后测对照组 在60个AACA中设计。长期目标是在不同的环境和人群中实施该计划 并加强针对少数群体照顾者的以文化为基础的技术干预方法。

Currently, in the U.S., 5.8 million persons are living with Alzheimer’s Disease, subsequently involving about 15 million family caregivers. The wide negative influences of caregiving on health outcomes of family caregivers of persons living with Alzheimer’s Disease (PLAD) have been reported. Furthermore, racial/ethnic minority women including Asian American midlife women are more likely to suffer from caregiving burden compared with their counterparts, mainly due to their cultural attitudes related to Alzheimer’s Disease and caregiving (e.g., stigma, family obligations, women as caregivers). To reduce the burden of caregiving on the health outcomes of midlife women who are family caregivers of PLAD (MWPLAD), an increasing number of interventions to provide information and support/coaching have been developed and used. However, most of the interventions have rarely succeeded in achieving their goals, and dropout rates have been high. One major reason may be that the interventions have rarely been designed while considering caregivers’ cultural attitudes related to Alzheimer’s Disease and caregiving. For instance, due to cultural hesitance to discuss dementia, Asian Americans tend not to share their caregiving experience, including their heavy burden of caregiving and subsequent psychological and physical symptoms, until they get severe/serious problems/issues that cannot be tolerated anymore. Also, most interventions require MWPLAD to arrange care for the care recipient while the caregivers travel to and attend the interventions. With advances in computer and mobile technologies, a technology-based program can provide a highly innovative and effective way (without physical attendance) to provide information and coaching/support for MWPLAD while considering their cultural attitudes. Thus, based on the Bandura’s Theory, the research team developed the first technology-based information and coaching/support program that is tailored for Asian American midlife women who are family caregivers of PLAD (TACAD) while considering their cultural attitudes. TACAD uses a web app with Virtual Reality technology and has several innovative features in its design and delivery methods that overcome shortcomings in existing programs (including cultural tailoring and self-adaptation functionality using a machine learning method). The purpose of this 2-phase, mixed- methods, exploratory study is to preliminarily evaluate TACAD in improving health outcomes of Asian American midlife women who are family caregivers of persons living with Alzheimer’s disease (AACA) and their care recipients. Specific aims are to: (a) qualitatively evaluate TACAD through an expert review and a usability test; and (b) quantitatively evaluate the preliminary efficacy of TACAD in improving health outcomes of AACA and their care recipients. Phase 1 includes an expert review among 5 experts in in family caregivers of PLAD and a usability test among 10 AACA. Phase 2 adopts a randomized repeated measures pretest/posttest control group design among 60 AACA. Long-term goals are to implement the program in various settings and populations and enhance the methodology of culturally tailored technology-based interventions for minority caregivers.