Webnovela for Hispanic Dementia Family Caregivers

描述（由申请人提供）：每69秒，美国就有一人患上阿尔茨海默病（AD）和相关痴呆症，不仅影响患者，而且影响家庭护理人员（约1500万），他们大部分未经培训，被医疗保健系统忽视，由于生活困难，压力（60%）和抑郁症（33%）的发病率很高。西班牙裔是最大的少数族裔，（占美国人口的16%）和增长最快的种族群体，面临着几个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岁及以上的白人为63%和30%）;西班牙裔的抑郁症更严重（45%）比其他群体;有限的医疗保险;语言能力问题;缺乏对痴呆症的了解;需要更多的帮助来处理与痴呆症有关的困难，文化上适当的干预措施较少，除西班牙语材料外，还需要文化上适当的干预措施，因为它们更有效，因为种族/民族身份会影响对痴呆症和家庭护理角色的信念，影响家庭如何科普痴呆症护理和应对干预措施。有效的西班牙裔干预措施的另一个主要挑战是保留参与者和坚持医疗保健计划。我们提出了一个新的干预称为Webnovela（WN），一个简短的西班牙语在线Telenovela，专门为西班牙裔护理人员设计的如何科普痴呆症护理，减轻护理负担，减轻压力，缓解抑郁症。我们的电视剧DVD也将为非互联网用户创建。由于Telenovela是一种有限的“电视小说”戏剧，是西班牙裔最受欢迎的电视类型之一，“Telenovela”干预可能会增加主题保留和干预坚持。网络小说也有很大的潜力，因为互联网对西班牙裔美国人非常有吸引力，有大量的西班牙裔美国人在线（2010年为3000万），增长速度是美国在线人口的两倍。基于肥皂剧的行为干预研究是一个尚未探索的领域。WN是第一个（如果不是痴呆症护理人员的第一个）。小说WN包括：（a）心理教育和认知行为疗法，这是减少压力/抑郁的非常有效的行为干预措施;（B）将循证指南翻译和改编成针对西班牙裔的具有文化敏感性的短篇电视剧;（c）创造性地使用电视剧媒介，吸引和激励用户遵循干预措施。相关临床优势包括：鼓励照顾者参与，提高干预的坚持性，并使技能更好的吸收;这应该提高照顾者的技能，以处理高要求的护理任务，减轻护理负担，提高生活质量，减少压力，并有助于缓解抑郁症。我们将与阿尔茨海默氏症协会、专家咨询委员会和护理人员合作，在第一阶段开发和评估原型。我们将评估完整的WN（包括所有模块）在改善健康，减轻压力和缓解抑郁方面的有效性，并在第二阶段进行随机临床试验。

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.