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Moving The Community Forward: Making an Impact Through Alzheimer's Education

Moving The Community Forward: Making an Impact Through Alzheimer's Education
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September 18, 2018
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"Promotores" is the Spanish term for community health workers, individuals who provide training and resources in Hispanic/Latino communities across the country. Paid and volunteer promotores may work part- or full-time with nonprofit organizations, clinics and public health departments. Maribel Landeros is a lead promotora.

“Many promotores work as volunteers,” says Maribel, who is based in Santa Barbara County. “With any new assignment, we go through core training that helps us learn the goals and history of the group we are working with, such as the Alzheimer’s Association.” Promotores de salud learn a variety of skills that include public speaking and the implementation of effective outreach services. But Maribel says one skill is regarded as the most valuable. “The most important skill of all is the willingness of promotores to help in their community. There are promotores so skilled in their work that many are swiftly hired by the organizations they volunteer with … their passion for the community they serve is so great.”

In working with the Alzheimer’s Association Central Coast Chapter, Maribel helps provide integral education about dementia and Alzheimer’s. One of the most vital pieces is that promotores are from the same community he or she is serving. “We aren’t from the outside, coming in to perform outreach. A term that I’ve coined is ‘inreach’; we reach into the same community we are from, and the people feel at ease with us. We get a lot of resistance with any disease, and Alzheimer’s is no different. We need to be there to continue to educate.”

It’s not that the community doesn’t want to be educated about Alzheimer’s and dementia. The stumbling block is fear about what to do. “The thinking is: ‘If I am aware, then I need to do something.’” Promotores understand that lack of care comes in various forms, whether it is a language barrier, a lack of medical coverage or the inability to get any coverage at all. “Promotores are able to speak openly with people facing Alzheimer’s disease and are able to tell the community that it is okay to be scared, but if you are aware, there are steps you can take to make the road easier to travel. You are not alone.”

One stumbling block is that the Hispanic/Latino community isn’t always aware of the signs of dementia and Alzheimer’s. “One of the biggest issues I’ve identified is the lack of understanding of what Alzheimer’s is. People think their loved one is just grumpy or lazy when he or she doesn’t want to shower or go anywhere, and don't look deeper into the issue. My goal is to make more people aware early on, and be able to identify the difference between old age and signs of dementia.”

“When people come to my presentation, it can be enlightening, and they become more proactive. They realize: ‘Oh my gosh, I am diabetic, I am overweight, I have a higher risk for dementia because I am Hispanic and my mother had signs of the disease.’ Much of the population in my community isn’t even aware of what the disease is, or doesn’t feel like the education is relevant until they experience it. Once they do, they tell their neighbors, their friends, their family. They spread the word within the community, and they send information back to the people in their home country that they think may be experiencing signs of the disease.”

Resources the Alzheimer’s Association provides have been integral to Maribel’s work. “Alz.org is an excellent resource for our population, as many of the resources are in Spanish,” Maribel says. “We refer people to the website and ask them to share online and print materials with their families. Many who receive this information don’t always need the information at the exact moment they receive it … but they have it for when they do. It’s a little library that they can keep at arm’s length, or pass on to a friend in need.”

Maribel knows how important this information can be in changing how people are educated about the disease. “I am a diabetic. When I first learned about Alzheimer’s, and how it can be connected to other diseases, I thought, ‘How come no one told me about this before? Alzheimer’s affects our community so much … why am I just now hearing about this?’ I felt scared, and I felt cheated. Latino communities need to have this information.”

“Because of the support of the Alzheimer’s Association, the central coast area is so much further along than some other areas. We are small but mighty! While it’s exciting to see the impact we can have, it can also be frustrating. Not every population, community or person is where they need to be in terms of education and resources. We all need to do more.”

Those resources are vital, and the impact education can have reaches much further than the central coast. “One of our promotoras learned her dad, still living in Mexico, was diagnosed with dementia,” Maribel continues. “We directed him and his family to alz.org, and the promotora was able to take all of her materials back on a visit to Mexico, where she did a presentation to educate her family and friends. She was able to make a huge and important impact in her own family. The reach of our programs grows and grows.”

Maribel also wants caregivers to have as many care options as those living with the disease. “My mom and dad are also promotores. My mom is at every class she can take, and all we do – on local radio, on the street, in education sessions – is talk, talk, talk about Alzheimer’s. We encourage people to identify the signs of Alzheimer’s, to self-identify as caregivers and to take advantage of the respite care available through the Alzheimer’s Association. We want people to feel comfortable saying that they need help, and to avoid taking on more than they can. I want all caregivers to know that as this disease progresses, it will hit you like a ton of bricks. You need to reach out for help. Recognize that you are more than a wife or a mother-in-law or daughter. YOU are a caregiver as well. Take care of you.”

Maribel tries to make an impact every day in her community by encouraging people to get involved in clinical studies, which are vital in learning more about Latinos and Alzheimer’s. “The more we share and know, the better this community will be prepared to face this disease head-on. If you know something, how can you not do something? Those who use their education and experience to help others in the community are the exact type of people who make the perfect promotores. I can’t hear the stories our community is facing and sit with my knowledge without taking action. I have to help move our community forward.”

Related articles:
10 Signs (Spanish)
Facts & Figures (Spanish)
 

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