265262 Use of an online community to provide support to caregivers of people with dementia

Sunday, October 28, 2012

Marta Pagán-Ortiz , Environment & Health Group, Cambridge, MA
Dharma Cortés, PhD , Environment & Health Group, Cambridge, MA
Sue Levkoff, Sc.D., S.M., M.S.W , Environment & Health Group, Cambridge, MA
Noelle Rudloff, MA , Environment and Health Group, Cambridge, MA
One of the challenges faced by many family members of patients with dementia (including Alzheimer's disease) is the lack of accessible information about how to take care of the patient and the caregivers themselves. In 2008, by way of addressing this need, we began the development of a website (cuidatecuidador.com) which is designed to create an online community for caregivers of people with Alzheimer's disease and related dementias. This website provides information (in written and audio formats) in Spanish and English for caregivers of people with dementia. Its content was developed and later evaluated by caregivers residing in Puerto Rico, Mexico, and the United States. Cuidatecuidador.com allows users to send questions to experts and to connect with other caregivers. It also provides a forum for users to share stories that describe and reflect their roles as caregivers and for professionals who want to share their knowledge and experiences related to dementia. Through the website, caregivers also have access to additional information about dementia, ways to take care of themselves, and social exposure to other caregivers. In order to address the ubiquity and ease of access that is possible through social media, cuidatecuidador.com is also available through Facebook— where close to 2,000 users have registered— as well as Twitter, and Youtube. The Facebook page registers about 1,400 unique visits per month by users from 36 different countries. This paper will discuss key information about the site's development and sustainability as well as the benefits of using social media for caregivers.

Learning Areas:
Implementation of health education strategies, interventions and programs
Planning of health education strategies, interventions, and programs

Learning Objectives:
1)Identify other content areas within the elderly population to which this technology could be applied, such as isolation, depression and end of life planning. 2)Design similar interventions to address the needs of caregivers of elderly patients with other chronic and debilitating conditions. 3)Compare the outcomes of an online support community with face-to-face support group approaches.

Keywords: Aging, Caregivers

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have a broad range of experience with many different aspects of health as they relate to low-income Spanish-speaking Hispanics dealing mental disorders. My work has allowed me to develop excellent interviewing and data interpretation skills that are crucial for dealing with populations that are wildly fluctuating in terms of types of economic and health statuses. I have worked on multiple federally-funded grants as research assistant, coordinator, and interviewer.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.

Back to: 2032.0: Alzheimer's Disease, Dementia, and Related Issues