Each month, we’re featuring an advocate who engages with policymakers to ensure priorities that improve the lives of people impacted by Alzheimer’s and all other dementia remain top-of-mind in Congress.
Thirteen years ago, Gigi Gabriel from Arkansas was a young mother with five children when her mother Edivia was diagnosed with early onset Alzheimer’s disease. Edivia was only 54 years old. She had worked her whole life as a seamstress.
“When I started noticing that she didn’t know how to thread her machine, something that she’s been doing for 30 years, the reality started hitting. I started talking to my father about it. It was kind of the elephant in the room,” said Gigi.
Gigi and her family were unfortunately already familiar with the disease, as her mother’s mother had passed away from it and several of her mother’s siblings had been diagnosed. “She went and got diagnosed. I remember that moment in the office, looking at my dad, breathing in. Even though we knew what it was, it still was shocking to us,” said Gigi.
Soon after, Gigi closed her business and quit her job to take care of her mom. Her dad changed his work schedule, and between the two of them they took care of her.
“We were lucky that he worked for an amazing company that knew what was going on, and so they let him change his schedule,” said Gigi. “I’d drop off my kids at school, I’d go to my parents’ house to take care of her, and when my dad got off work he’d come and take care of her in the evening.”
“For me, the advocacy isn’t just for my mother, it’s for my children. Because realistically, I’m high risk. There’s a probability that I could get it, because this is generational it seems. Advocacy to me is much more than just a personal thing. It’s a family thing for me,” said Gigi.
Gigi began volunteering with the Alzheimer’s Association, and she started advocating five years ago.
“I started volunteering [with the Alzheimer’s Association] because I felt like I needed something that was mine. I didn’t have anything that was mine,” said Gigi.
Last year, because of Gigi’s relentless advocacy as the AIM Ambassador to Sen. Tom Cotton (R-Ark.), he agreed to cosponsor the Comprehensive Care for Alzheimer’s Act. Because of Gigi and hardworking advocates throughout the nation, the Centers for Medicare & Medicaid Services (CMS) recently announced a dementia care management initiative that is consistent with the bipartisan Comprehensive Care for Alzheimer’s Act.
Throughout her time advocating, Gigi has been direct in sharing her experience as an Alzheimer’s caregiver and how dementia impacts families like hers. “I didn’t like being a caregiver, and I’m very direct with that. I’m a mother, and I love being a mother, but caring for her was very, very hard for me. That was something I felt guilty about for a very, very long time. I still feel guilty about it.”
“I think [caregiving] is a beautiful act of kindness and graciousness and love. It’s an act of love. But the person who is a caregiver gives so much,” said Gigi.
“People don’t realize it just doesn’t affect one person. It affects families. With my dad, he gave up everything for her, but he also gave up his health.”
Gigi is also extremely passionate about advancing health equity and ensuring underrepresented populations have access to dementia resources and quality care. Underrepresented and underserved communities are disproportionately impacted by Alzheimer’s and dementia.
“My advocacy is not just for me, it’s for what I saw when I was at the beginning. There was no one for me, there was no one who looked like me,” said Gigi. “That was the true moment of realizing, well, I need to be that person. I need to be that person that I wish I saw.”
For the last two years, Gigi has attended the AIM Advocacy Forum in Washington, D.C. This year, she attended only weeks after losing her mother. Gigi met other advocates who come from all across the nation and have many different backgrounds, but they all share a similar experience with dementia.
“I always felt alone. And no matter who I talked to, online or whatever, it still wasn’t the same,” said Gigi. “But to actually see people and talk to them, and they went through the same thing, it felt like, ‘Okay, so mine wasn’t unique. Mine wasn’t so isolating, because there’s other people who are just like me, and they hate the disease.’’’
Learn how you can get involved and become an advocate like Gigi.