Webnovela for Hispanic Dementia Family Caregivers

描述（由申请人提供）：在美国，每69秒就有一个人患上阿尔茨海默病（AD）和相关的痴呆症，不仅影响患者，而且影响家庭护理人员（约1500万），他们大多未经培训，被医疗保健系统忽视，由于护理困难，压力（60%）和抑郁症（33%）的发生率很高。服务不足的一大群体是西班牙裔，他们是最大的少数民族（占美国人口的16%），也是增长最快的种族群体，面临着一些健康差距和护理障碍：阿尔茨海默氏症的发病率较高（例如，85岁及以上的白种人为63%，而白种人为30%）；西班牙裔美国人比其他群体更容易抑郁（45%）；有限医疗保险；语言能力问题；缺乏关于痴呆症的知识；除了西班牙语材料外，还需要文化上适当的干预措施，因为它们更有效，因为种族/民族身份影响对痴呆症和家庭护理作用的看法，影响家庭如何应对痴呆症护理和对干预措施的反应。有效的西班牙裔干预的另一个主要挑战是参与者的保留和坚持医疗保健计划。我们提出了一种新的干预措施，叫做Webnovela (WN)，这是一种西班牙语的简短的在线电视节目，专门为西班牙裔护理人员设计，告诉他们如何应对痴呆症护理，减轻护理负担，减轻压力，减轻抑郁。我们还将为非互联网用户制作一部电视剧的DVD。由于电视剧《肥皂剧》（Telenovela）是西班牙裔最受欢迎的电视剧类型之一，因此“肥皂剧”干预可能会增加受试者的记忆和干预依从性。网络中篇小说也有很大的潜力，因为互联网对西班牙裔非常有吸引力，西班牙裔网民数量很高（2010年为3000万），其增长速度是美国网民总数的两倍。基于电视剧的行为干预研究是一个未开发的领域。WN是第一个（如果不是痴呆症护理人员的第一个）。这一新颖的WN结合了：(a)心理教育和认知行为疗法（CBT），这是非常有效的行为干预措施，可以减少压力/抑郁；(b)将基于证据的课程翻译和改编为西班牙裔人的文化敏感短片；(c)创造性地使用肥皂剧媒体来吸引和激励用户跟随干预。相关的临床优势是：鼓励护理人员参与，提高干预依从性，并使技能更好地同化；这将提高照顾者处理高要求的照顾任务的技能，减轻照顾负担，提高生活质量，减轻压力，并有助于缓解抑郁症。我们将与阿尔茨海默氏症协会、专家顾问委员会和护理人员合作，在第一阶段开发和评估原型。我们将在第二阶段通过随机临床试验评估完整的WN（包括所有模块）在改善幸福感、减轻压力和减轻抑郁方面的有效性。

DESCRIPTION (provided by applicant): Every 69 seconds someone in US develops Alzheimer's Disease (AD) and related dementia, affecting not only patients, but family caregivers (~15 million), largely untrained and neglected by the healthcare system, with high incidence of stress (60 percent) and depression (33 percent) due to difficulties of caregiving. A large underserved group is Hispanic, the largest minority (16 percent of US population) and the fastest growing ethnic group, facing several health disparities and barriers to care: higher incidence of Alzheimer's (e.g. 63 percent versus 30 percent for Caucasians age 85 years and over); greater depression in Hispanics (45 percent) than in other groups; limited medical insurance; language proficiency issues; lack of knowledge about dementia; greater need for help to deal with difficulties related to dementia, fewer culturally appropriate interventions, etc Besides materials in Spanish language, culturally appropriate interventions are also needed, because they are more effective, as racial/ethnic identity influences beliefs about dementia and family care giving role, affecting how families cope with dementia care giving and respond to interventions. Another major challenge for effective Hispanic interventions is the retention of participants and adherence to healthcare programs. We propose a new intervention called Webnovela (WN), a short online Telenovela in Spanish, specifically designed for Hispanic caregivers on how to cope with dementia care giving, reduce burden of care, decrease stress, and alleviate depression. A DVD with our Telenovela will also be created for non-Internet users. As Telenovela, a limited-run "television novel" drama, is one of the most popular television genres for Hispanics, a "Telenovela" intervention is likely to increase the subject retention and intervention adherence. A Webnovela also has a high potential, since Internet is very appealing to Hispanics, with a high number of online Hispanics (30 million in 2010), and growing two times faster than overall US online population. Research on Telenovela-based behavioral interventions is an unexplored field. WN is one of the first (if not the first one for dementia caregivers). The novel WN incorporates: (a) psychoeducation and Cognitive Behavioral Therapy (CBT), which are very effective behavioral interventions to reduce stress/depression; (b) translation and adaptation of evidence-based curriculums into a culturally sensitive short Telenovela for Hispanics; and (c) creative use of Telenovela medium to engage and motivate users to follow the intervention. Related clinical advantages are: encourage caregiver participation, enhance intervention adherence, and enable better assimilation of skills; which should enhance caregivers' skills to deal with demanding tasks of care giving, reduce burden of care, improve quality of life, decrease stress, and help to alleviate depression. In partnership with the Alzheimer's Association, expert Advisory Board and caregivers, we will develop and evaluate a prototype in Phase I. We will assess the effectiveness of the complete WN (with all modules) in improving well-being, decreasing stress, and alleviating depression with a randomized clinical trial in Phase II.