Latino family members are often the caregivers for their loved ones with Alzheimer's disease and related disorders (ADRD), but they face many barriers in accessing and utilizing services. To address these barriers to care, we implemented a Phase I SBIR project, in which we developed a culturally competent, prototype website for Latino caregivers. In this Phase II SBIR project, we will expand the Phase I prototype bilingual website into a fully functioning, content-rich, culturally relevant, accessible, interactive and sustainable on-line community, CareHub.org. The CareHub project is designed as a working system for engaging Latino caregivers and providing ADRD information, and as a culturally-compatible online virtual community that can support its members. The website will provide real time, online education and support for Latino family caregivers including culturally competent information about Alzheimer's disease and related disorders, practical """"""""how-to"""""""" instructions about managing dementia-related behaviors, and information on taking care of oneself. New technologies will include a discussion forum for caregivers, an """"""""ask an expert"""""""" resource, links to other national resources, and a series of interactive mini-tutorials on using the website. The Phase II aims are to: (1) Expand website information available to Latino caregivers about the symptoms and course of ADRD, caregiving skills, and tools and information for maintaining their own health and well-being; (2) Build additional features and infrastructure (e.g., bulletin board, chat room) for online peer support and interaction among caregivers using the website; (3) Add an expert advice feature to the website; (4) Evaluate the website, with a focus on the effectiveness of the website in increasing knowledge of ADRD, improving caregiver's competence, enhancing perceived social support, improving attitude towards service use, and reducing caregiver burden and emotional distress; and (5) Market and commercialize the website through collaboration with health, elder care, Latino and Alzheimer organizations to ensure financial and administrative sustainability of the website. ? ? ?
| Pagán-Ortiz, Marta E; Cortés, Dharma E; Rudloff, Noelle et al. (2014) Use of an online community to provide support to caregivers of people with dementia. J Gerontol Soc Work 57:694-709 |
