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.

For Jeannie Castells of New Jersey, the fight against Alzheimer’s is deeply personal. After losing multiple loved ones to this devastating disease, Jeannie felt she needed to do something with her grief and speak truth to power. Referring to advocacy as “mourning on my feet,” Jeannie took action by becoming an AIM advocate. 

As a child, Jeannie saw her grandfather progress through the changes of Alzheimer’s disease and pass away when she was 14 years old. Despite his previous work as a doctor specializing in neuroscience, he and his family did not recognize Alzheimer’s.

“That was the beginning of my exposure to Alzheimer’s, what that looks like and how that changes a person,” said Jeannie. “My grandfather, who was living with us, was no longer himself. This is so far back that the word Alzheimer’s wasn’t even in use…We just didn’t know what it was.”

Years later, Alzheimer’s struck Jeannie’s family again. 

“Fast forward to my mother, now we have a name for it. Now it’s Alzheimer’s,” said Jeannie. “We were finding out what was going on with her, getting a diagnosis. This was happening at the same time that my husband was also getting a diagnosis of Alzheimer’s and a brain tumor.”

Along with her father and brother, Jeannie remembers the challenges of juggling caregiving responsibilities for her mother and husband during those years. “I was running back and forth between the two houses taking care of everybody. My children were helping me,” said Jeannie. “My mother was gently, sweetly rolling downhill, and so was my husband.”

Alzheimer’s and caregiving took a toll on their family. “As we got to the end of the 15 years of looking after [my mother and husband], I had lost my father from a broken heart, my brother suddenly, I think from caregiver stress, and then nine weeks to the day after my brother died my mother died. My husband died a little more than a year later,” said Jeannie.

About a month after her husband passed away, Jeannie was in her living room on her laptop when she came across a notice for the AIM Advocacy Forum in Washington, D.C. Recognizing that she needed to do something with her grief, Jeannie decided to attend. 

“I was nervous. I didn’t know anybody,” said Jeannie. “There were at least a thousand people, and I don’t know a soul. I see a sign with New Jersey, and I go over there. I realized in five minutes I was in the right place. I know everybody in this room and what they’ve been through, and they know me.”

In the beginning, Jeannie remembers feeling anxious about going into meetings with members of Congress. But after attending different sessions, learning about the different policy priorities and meeting her fellow advocates, she felt ready. “We always go in with our delegation, so we’re not alone,” said Jeannie. 

“All of your fellow advocates and ambassadors are going to lift you up, give you confidence, give you ideas,” said Jeannie. “We talk to each other, we bolster each other up, it’s like a huge pep rally. We all believe in what we’re doing, and we all believe in each other.” 

During the Forum, Jeannie enjoys learning the latest on Alzheimer’s and how the policy priorities will improve the lives of people impacted by Alzheimer’s and other dementia throughout the nation. Over the last decade, her confidence has only grown. 

“I love that feeling of being confident, self-assured in what I’m doing,” said Jeannie. “You can get your message delivered and that’s how bills pass. It’s personal.”

Since her first Forum in 2014, Jeannie has attended every year the event was held. “I can't help it, I have a lot of energy,” said Jeannie. “I walk in with a lot of energy, and we work together to get things done.” 

Over the years, Jeannie has come to recognize that congressional staff play a critical role in advancing Alzheimer’s policy priorities. “It’s not important whether you meet with your representative or staff. The staffers are the heart and soul of your work,” said Jeannie. “If there’s anything I know, it’s that I make sure that I get connected to the staffers and stay in touch with them.” 

About three years ago, Jeannie made the decision to become a member of AIM Leadership Society, the philanthropic foundation of AIM that elevates the voices of Alzheimer’s advocates and drives policymakers to take action. 

“You get to know the person in Congress in a whole different way, and they get to hear you in a whole different way,” said Jeannie.

Additionally, Jeannie has gotten involved with her local Walk to End Alzheimer’s. Over the past decade, she has attended 10 Walks, and for nine of those she worked with a member of Congress who attended the event. During the Walk, Jeannie works as a team member answering questions and providing resources. 

Reflecting on her 11 years of volunteering and advancing the mission, Jeannie has no plans to step back.

“I love [advocacy]. It keeps my loved ones who are no longer here very close to my heart,” said Jeannie. “As long as I have my brain working and my legs to stand up on, I would love to continue doing this. It’s so powerful.”

Learn more about how you can become an AIM advocate or join the AIM Leadership Society.