Alzheimer’s disease is the sixth leading cause of death in the U.S., impacting an estimated 5.8 million Americans who currently live with the disease. Many of them are 65 and older and live in places with limited access to health care and education, which heightens the risk of developing Alzheimer’s.
Florida Atlantic University has a new 32-question survey tool called "Basic Knowledge of Alzheimer's Disease," that is working to gauge Floridians' knowledge about the disease and help connect them to resources.
Dr. Lisa Wiese, assistant professor at Florida Atlantic University’s C. E. Lynn College of Nursing, recently received a grant from the Association of Community Health Nursing Educators and the Florida Department of Health to conduct the survey in rural communities. It has already been tested in Belle Glade and Pahooke. Wiese joined Sundial to talk about the survey.
WLRN: What is the challenge in reaching people in some of the rural parts of the country, especially here in Florida?
WIESE: In rural areas we know that we have less providers. The transportation to get to providers, especially specialty providers, is very difficult. We often see this disconnect between people who are at higher risk for Alzheimer's disease in rural populations and getting them to these providers.
What's your interest in understanding and helping people with this disease?
My mother passed from Alzheimer's disease at almost age 98. I'm from West Virginia Appalachian area, but she was very fortunate that her primary provider recognized her symptoms immediately and put her on medications. We do know that an earlier start to medication, therapy and lifestyle changes can make a big difference in how effective those are. So she actually never progressed in her illness much beyond the extreme short-term memory loss that people experience. And that motivated me to try to help other people in rural areas who don't often have access.
The tool that you're working on helps one to find out what people know but also to help them get that information. How does that work?
This tool is available for anyone who wants to use it and it's also been translated into Creole and Spanish. It's been piloted and tested and you could take that into your community setting, senior living, churches, wherever you have a gathering of adults and find out what they know and don't know. Then we do education and correct myths.
What are some of the communities you're looking at?
First, I started in the rural areas of Florida and around the Glades region. And then once we had a defined version of the knowledge measure then we went to five different counties in five different states in rural areas such as Alabama, North Carolina, Virginia and so on.
What have you learned so far?
One thing in rural areas is that community is everything. So they have a real compassion for helping each other and they want education and they want to be included in research and what's going on. This is a whole area that we could tap into.
Most of these rural residents do have a primary provider that they have a strong relationship with and that they feel confident in going to see regularly. What is not happening is that they are not being tested for memory loss. There is no cognitive screening going on even though if you asked the provider or the participants if they wanted to be screened an overwhelming 88 percent wanted to be screened, but it's not happening because either the provider is too busy or they think they can't manage the illness if they do detect it.
And what's the next step in this research?
The next step is getting providers to the rural areas, policy changes, rewarding practitioners for being out in the rural areas and also empowering people to reach clinics through transportation, through shared rides, through free Uber or whatever it would be to get people to those clinics.