Improving Dementia Care at Home and Reducing Burden for Family Caregivers

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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.