<< Back
Can a novel, web-based intervention help Spanish-speaking Hispanic individuals with dementia and their caregivers make decisions about future care?
Sara Bybee, Ph.D.
University of Utah
Salt Lake City, UT - United States
Background
Alzheimer’s disease gets worse over time, and people with the disease often reach a point where they are unable to make decisions on their own. Many researchers, therefore, are studying ways to promote “advanced care planning” (ACP) for these individuals and their caregivers. ACP enables people with dementia to communicate and document their wishes about future medical care and end-of-life decision-making.
One avenue of ACP research involves addressing disparities in dementia care. Hispanic Americans, for example, have been shown in some studies to be one and a half times more likely to develop Alzheimer’s as White Americans. Studies have also shown that Hispanics are less likely to receive a formal diagnosis of the disease, and less likely to receive effective treatment and care. In response to these disparities, Dr. Sara Bybee and colleagues have developed a novel resource for Hispanic Americans living with dementia called the Spanish-LEAD Guide. This web-based, self-administered tool, which has been translated into Spanish from their English-language LEAD Guide, helps Hispanics with dementia and their caregivers to discuss, and eventually make, decisions about future care and end-of-life preferences.
Research Plan
Dr. Bybee and the team will now devote their research grant to refining and testing the effectiveness of their Spanish-LEAD intervention. First, working with a development team that includes five Hispanic caregiving “dyads” (people with dementia and their caregivers), as well as Spanish-speaking dementia experts, the researchers will refine Spanish-LEAD to make it more culturally appropriate for the Hispanic community. They will then recruit another group of Hispanic caregiving dyads to undertake and assess the refined intervention. Participants with Alzheimer’s will be in the early stage of the disease before significant cognitive decline has taken place. Each participant will undertake the intervention for 12 weeks and then answer questionnaires to assess how easy the program was to use and whether its activities made sense and were helpful. Dr. Bybee’s team will then use statistical methods to analyze the results and identify ways of further refining the intervention.
Impact
Findings from this project could provide vital information for future, more extensive evaluation of the Spanish-LEAD intervention. Ultimately, they could lead to a novel tool for promoting dementia care, as well as individual well-being, among people with dementia in an underserved community.
Back to Top