Improving Dementia Care at Home and Reducing Burden for Family Caregivers

描述(申请人提供)：阿尔茨海默氏症和相关疾病(ADRD)结合在一起，构成了21世纪美国老龄化人口面临的最紧迫的医疗挑战之一。截至2008年，估计有520万各个年龄段的美国人患有阿尔茨海默氏症。近75%的ADRD患者的护理是在家里提供的。痴呆症患者的照顾者表示，需要持续的、全面的、可获得的教育支持，以帮助管理错综复杂的照护困难网络对身体和心理的影响。不幸的是，对于这些护理者来说，初级保健医生和其他卫生专业人员--家庭护理者通常要求他们提供患者教育或护理支持--往往缺乏充分的准备或时间来充分回应护理者与ADRD相关的需求。目的：通过使用一种创新的、基于互联网的、互动的心理教育计划，超越现有的照顾者教育方法，来减轻照顾者的负担并延长对照顾者角色的满意度。方法：开发和测试一个引人入胜的信息课程，充分利用互联网的媒体能力(流媒体视频、音频、动画、照片、图形和动作)及其处理和响应用户输入的能力。家庭照顾者可以全天候、全天候、以私人方式方便地接触到整个ADRD“干预顾问”团队，他们扮演着成功的痴呆症照顾者、ADRD知识专家、心理社会支持专家、悲伤和失落顾问、个人教练和友好顾问的角色。研究和评估：第一阶段的工作旨在评估计划的可用性，验证计划的内容材料，并确定第二阶段工作的可行性。的设计将纳入一个迭代的过程，包括来自专家顾问团队和家庭照顾者的反馈。家庭照顾者参与者将完成知识的前后测试；关于技术困难和对原型的反应的定性、开放式问卷；以及帮助确定可行性的定量的5分利克特量表评估。大量家庭照顾者的教育需求导致了强大的商业潜力。此外，拟议的干预产品还可能在社区教育、医疗办公室、医疗保健机构和工作场所环境方面惠及普通公众。公共卫生相关性：2008年，估计有520万所有年龄段的美国人患有阿尔茨海默氏症及相关疾病(ADRD)，到2030年，65岁及以上的人口估计将达到770万。阿尔茨海默氏症协会的专家估计，2005年美国正式的ADRD护理费用每年超过1,480亿美元。由于心理教育干预已被发现可以减轻作为照顾者的负担和压力，并推迟养老院的安置，预计这一努力将导致家庭ADRD照顾者技能的提高，照顾者负担的减轻，以及对照顾者角色的长期满意度，从而使照顾者更有能力和更愿意继续照顾患有ADRD的人。

DESCRIPTION (provided by applicant): Alzheimer's Disease and related disorders (ADRD) combine to form one of the most urgent healthcare challenges facing the aging population of 21st Century America. As of 2008, an estimated 5.2 million Americans of all ages have Alzheimer's disease. Nearly 75% of the care for persons with ADRD is delivered at home. Caregivers of persons with dementia express a need for ongoing, comprehensive, accessible educational support to help manage the physical and psychological effects of an intricate web of caregiving hardships. Unfortunately for these caregivers, primary care physicians and other health professionals, whom family caregivers typically call upon for access to patient education or care support, often lack either the preparation or the time to adequately respond to caregivers' ADRD-related needs. Objective: to achieve a reduction in caregiver burden and prolonged satisfaction with the caregiving role by using an innovative, Internet-based, interactive psychoeducational program that exceeds existing methods of caregiver education alone. Methods: develop and test an engaging informative curriculum taking full advantage of the media capabilities of the Internet (streaming video, audio, animation, photo, graphics, and movement) as well as its ability to process and respond to input by the user. Family caregivers gain convenient, 24/7, private access to a whole team of ADRD "intervention consultants" shown fulfilling the role of a successful dementia caregiver, ADRD knowledge experts, psychosocial support specialists, grief and loss counselors, personal coaches, and friendly advisors. Research and Evaluation: The Phase I effort seeks to evaluate the usability of the program, validate the content material of the program, and determine feasibility for a Phase II effort. The design of will incorporate an iterative process involving feedback from an expert consultant team and family caregivers. Family caregiver participants will complete a pre- and post-test of knowledge; a qualitative, open-ended questionnaire regarding technical difficulties and reaction to the prototype; and a quantitative, 5-point Likert-scale evaluation to help determine feasibility. The educational need of this large number of family caregivers results in a strong commercial potential. In addition, the proposed intervention product may also benefit the general public in terms of community-education, medical-office, healthcare-agency, and workplace settings. PUBLIC HEALTH RELEVANCE: An estimated 5.2 million Americans of all ages have Alzheimer's Disease and Related Disorders (ADRD) in 2008, and the number of people age 65 and over is estimated to reach 7.7 million by 2030. Alzheimer's Association experts estimated the 2005 U.S. cost of formal ADRD care at more than $148 billion annually. Because psychoeducational interventions have been found to mitigate the burden and stress of being a caregiver and delay nursing home placement, it is anticipated that this effort will result in an improvement of family ADRD caregiver skills, a reduction in caregiver burden, and prolonged satisfaction with the caregiving role so that caregivers are better able and more willing to continue home care of those with ADRD.