[Editor’s note: The September, 2019 print edition of La Voz features articles and information about Alzheimer’s disease. This edition is a joint venture with the Alzheimer’s Association aimed at bringing more awareness among the Latino/Hispanic communities about the disease and its effect on people of color.]
A generation ago, people living with cancer didn’t want to say they had the disease. Now, often it’s a topic of conversation. “People say they have cancer and they get support,” said Estella Velez, a community educator/promotora at the Alzheimer’s Association, who works for Catholic Family Center. “Why not say with Alzheimer’s, you have a disease. You don’t need to be ashamed.”
People aren’t there – yet.
Velez is using her experience as a supervisor in the adult and aging services program with Catholic Family Center to educate Hispanic families about Alzheimer’s and connect them to services through the Alzheimer’s Association.
“The hard thing is, in the beginning they want to hide,” she said. “We know people have shame about this disease. Why? Because you don’t want people to know. They’re feeling bad.”
Velez said that some people think they should keep their family business private. But if people hide the disease, “there is no way they can get support” for themselves as caregivers or their loved one through the activities and resources of the Alzheimer’s Association and their community.
She said some family members try to do everything themselves. “Sometimes people want to be a super woman. It’s not good. You’re under stress many months. You can be sick. Your mom or your father won’t have the support when they need it. You need to have some help.”
Velez’s involvement with the association started accidentally about 10 years ago. She was representing Catholic Family Center at a health fair. She started talking with the Alzheimer’s Association representative at the next table.
Originally from Colombia, Velez was part of the Hispanic community that the Alzheimer’s Association knew it needed to reach. Hispanics are about 1 ½ times more likely than whites to develop the disease, according to data from the Alzheimer’s Association. Genetic factors do not appear to account for differences among racial groups. Socioeconomic factors and the rates of illness such as heart disease, high blood pressure and diabetes may be more responsible.
Velez received extensive training so she can explain dementia and how it can affect an individual and the family. “I say there are different types of dementia. It’s not only Alzheimer’s. Alzheimer’s is the more common.”
While dementia in general and Alzheimer’s specifically are associated with the elderly, the disease can strike people in their 50s or 60s. Velez said that because researchers are looking at possible connections between dementia and other chronic illness that affect the heart and the blood vessels, she encourages people to lead a healthy lifestyle.
“We teach controlling your sugar, blood pressure, weight,” she said. “We try to teach this to the community so they can go to their doctor.”
Velez said she is referred to families by nurses, through the Alzheimer’s Association and by people she knows. She said that older family members want information in Spanish but younger generations are more comfortable with English.
She talked about a baby shower, where she was asked to come early to talk with the family whose grandmother was showing signs of dementia. She said that because of the disease, the woman was more likely to remember her life in Puerto Rico from decades ago than to recognize what was going on around her on a daily basis.
To explain changes in the brain, Velez fills two boxes with corn. One represents a healthy brain and is heavier. The other represents a brain affected by dementia, and it’s lighter.
“It’s something tangible for them,” she said. “People understand the brain changes.”
Velez also teaches home health aides about working with individuals who have dementia. “The client says the sky is purple,” she said. “You say, yes, it’s purple. You don’t say, no it’s blue. You don’t want to start fighting with them, because they’re having a problem with the disease. … The goal is to give people with dementia a wonderful day, no crying, no fighting, no stress.”
Velez said she would like to start a Spanish language support group, but one of the barriers is time. She said many family members work multiple jobs and it can be difficult for them to attend sessions.
Alzheimer’s is not in Velez’s family, but her mother did have a brain tumor. Velez said that her knowledge about brain diseases helped her recognize symptoms and get tests for her mother. Her mother died in 2016.
Velez said the experience helped her understand the stress that families go through. Volunteering to help those families is emotional but gratifying. “You give relief,” she said.