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State Representative Fights Dementia Stigma in Latino Community

Borrowed with permission from the Alzheimer’s Association Illinois Chapter. Read the full story here.

 BY KATHERINE STEWART

“Latino families do not call it what it is,” says State Representative Barbara Hernandez of the 83rd District. She says that many minority communities accept Alzheimer’s disease and dementia as a normal part of aging. “I would get mad,” shares Representative Hernandez. “I would say, ‘Call it what it is. It’s dementia. It’s Alzheimer’s.” She has watched her grandmother in Mexico struggle with the disease and witnessed its impact on her family. The experience inspired Rep. Hernandez to advocate for a more dementia capable Illinois.

Rep. Hernandez is the daughter of first generation immigrants from Mexico and a lifelong resident of Aurora, Illinois. Her parents were undocumented for 21 years, which prevented them from being able to travel home. Rep. Hernandez connected with her extended family through letters, phone calls, pictures and social media during that time. She was able to meet her grandmother in-person in 2014 when her parents became residents. The signs of her grandmother’s dementia were already visible. She had trouble finding the right words and forming sentences.  

“Whenever we would talk I would say, ‘Hey, I think my grandmother has early signs of dementia, maybe she should go to the doctor.’ I was always told, ‘Oh no, she’s just forgetting a few things; she’s old.’” Her extended family attributed her grandmother’s forgetfulness to her age. Rep. Hernandez didn’t consider it her place to argue.

The experience weighed heavily on Rep. Hernandez after returning to Illinois. While she wasn’t face-to-face with her grandmother’s condition, it still had a tremendous impact on her. “I get to stay away from that and go back home to Aurora and leave everything behind,” she shared. “But it’s something I always have in my mind.”

Rep. Hernandez and her father returned to Mexico in November 2021. They were anxious to see her grandmother again: she had struggled with isolation and depression as a result of the COVID-19 pandemic. “When I went to my maternal grandma’s house, that was the hardest thing I’ve ever dealt with,” Rep. Hernandez said with emotion. “She thought I was her daughter.” 

“It was very upsetting to see, because of course back in 2014 I remember my grandma who could talk to me and knew who I was. And now, she thought I was a baby or her daughter.” Rep. Hernandez could recall the laughter and trips they shared, but her grandmother could no longer remember her. “You’re erased from their life. You’re still there, you can still hold their hand. However, in their mind you never existed,” she says. “You’re left alone thinking, how can this happen?”

Rep. Hernandez was appointed as the State Representative for the 83rd district in 2019, but her service to immigrant families started in college. She created a virtual resource board for her community where she gathered job opportunities–a program that is still in use today. Rep. Hernandez meets many constituents who have been impacted by Alzheimer’s and dementia through her work as a public servant. From what she sees, the disease is becoming normalized; families simply accept the symptoms as a part of normal aging. 

“I would say, ‘Call it what it is. It’s dementia. It’s Alzheimer’s…Why are we just normalizing it? How about we figure out how to fund science to prevent this from happening. How about we try to educate our doctors, our caretakers, our family members on this issue?” 

“That’s why I focus on legislation now,” Rep. Hernandez says. She is “very proud” to have supported legislation such as Senate Bill 677, which was signed into law in 2021 as the first bill in the nation to ensure ongoing dementia training for healthcare providers. To date, this is the strongest dementia-specific education mandate enacted for healthcare providers in the country.

“When I saw that bill, it was a no-brainer for me,” shares Rep. Hernandez. At that time, her grandmother’s condition was worsening. “That bill landed in my life at the perfect moment, where I was like, ‘Okay, I can’t do anything back in Mexico, but I can support this bill. And I can get educated more on this subject. And that’s what I’ve been trying to do.’

Rep. Hernandez is equally excited about the work she is doing in 2022 with the Alzheimer’s Association. “We’re carrying a bill this year that I’m hoping that we can get through. Because it’s very important that everybody gets trained, everybody is aware of the signs of dementia.” She is referring to the Community Care Program staff training bill, introduced earlier this month.

Many of our most vulnerable residents with Alzheimer’s or another dementia receive home and community-based services through the Community Care Program (CCP) at the Department on Aging. Senate Bill 3707 / House Bill 4620 will ensure that education on Alzheimer’s and dementia, safety risks, and effective communication are incorporated into the annual training for these providers. This minimum standard of education will allow consistent and safe delivery of important home and community-based services to people living with Alzheimer’s and dementia.

“Hopefully we can do a lot more in Illinois, and hopefully the country will catch up as well,” says Rep. Hernandez. 

Join Rep. Hernandez in advocating for a more dementia capable Illinois by registering for our Illinois Week of Action (February 22-24). Gather virtually with advocates from across the state by taking quick, easy actions from home. With a click of a button, you can help better the lives of Illinoisans affected by dementia. Learn more & register at endalzillinois.org.

Last Updated on February 4, 2022

Published by Chrishun Brown

Communications Manager for the Rush Alzheimer's Disease Center

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