Online Education and Support for Dementia Caregivers

DESCRIPTION (provided by applicant): PROBLEM: There are currently over seven million Americans living with dementia and most of them are cared for at home by a loved one. The negative impact of caregiving for someone with dementia has been well documented; caregivers' physical and mental health often declines as they struggle to care for their loved ones. SOLUTION: In response to the National Institute on Aging PA-06-049 (previously PA-04-064), we propose to further develop and evaluate a unique online intervention for informal (unpaid) caregivers of individuals with Alzheimer's disease and other dementias. Research has proven that psychoeducational interventions are effective in reducing caregiver stress, depression, and burden; the dynamic nature of the Internet is an ideal way to deliver such an intervention. This project will utilize our expertise in Internet technology, web usability, geriatrics, and health promotion to complete Phase II development of an innovative website for dementia caregivers. APPROACH: The prototype website was developed in Phase I and is available online at DementiaCareCentral.com. When completed, the site will provide dementia caregivers with online, interactive education and care management tools in the form of tailored content, skill-building activities, decision-support tools, peer support, and resources. It will be a centralized, organized, interactive resource unlike any other that currently exists for dementia caregivers. In Phase I we conducted a needs analysis with caregivers and geriatric health professionals and developed the interface and content of the DementiaCareCentral prototype. We also conducted two rounds of usability testing with caregivers to evaluate the website design and content, and developed the assessment instruments to be used in Phase II. In Phase II we will further expand the website content, develop programming needed to enable all interactive tools and features, and test and finalize the website interface design. We will conduct a six-month randomized controlled evaluation with informal dementia caregivers to measure the impact of the website on knowledge, self-efficacy, depression, and caregiver burden. Qualitative feedback and website usage data will also be obtained. BENEFIT: Educating caregivers about dementia and providing tips and tools to assist with caregiving should ultimately improve outcomes for both informal caregivers and their loved ones, including improved quality of caregiver-care recipient interactions, caregiver health and mental health, and care recipient long-term care placement and health status. The website DementiaCareCentral.com is designed to provide education and tips about dementia and caregiving. More specifically, it will help informal (unpaid) dementia caregivers: determine what educational content is best suited to their needs; identify and track symptoms of dementia in their loved ones; make educated decisions about health, caregiving, financial, legal, living and options; learn how to perform practical care skills; locate peer support from and communicate with other caregivers via an expanded social network; identify useful local and national resources. In the long term we expect that DementiaCareCentral.com will improve caregiver knowledge and self-efficacy and decrease caregiver burden and depression, ultimately leading to improved outcomes for both caregivers and their loved ones.