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 Dalma Riquelme of the Bronx, New York, advocacy grew out of caregiving. While spending 14 years caring for her mother, Dalma turned her experience into action. Today she meets with state and federal policymakers and pushes for legislation that would have made a real difference for her family. Her story is one of a caregiver who found her voice, her community and a way to make sure others don’t face what her family did.

Dalma’s mother was diagnosed with vascular dementia in 2010 at age 72. When the family turned to her doctor for guidance, they were given little more than medication to help manage her symptoms. As her mother’s symptoms progressed — agitation, wandering, no longer recognizing her own children — Dalma went looking for help on her own and found the Alzheimer’s Association.  

“I think [the Alzheimer’s Association] really saved us. It saved her too, because we really got the guidance,” Dalma said. Through the Association, Dalma accessed support groups and education classes. She recalls learning about resources that she didn’t even know they needed, like legal guidance on how to become her mother’s power of attorney.  

Although working full time while managing her mother’s care left little room, Dalma began participating in the Walk to End Alzheimer’s in 2012. “When you’re caring for someone with Alzheimer’s, at least from my experience, I felt a little bit useless at times because I couldn’t stop the progression of her illness,” said Dalma. “But [becoming involved with the Alzheimer’s Association], I felt like I could be a voice. I can do something, I can walk, I can speak to representatives about funding.”  

During the pandemic, Dalma had to leave her job to care for her mother full time. When she told her brother she was interested in pursuing advocacy but concerned about it interfering with her caregiving for their mother, her brother recognized the importance of advocacy and encouraged her to do it. “My brother and I were very supportive of each other during this time. He would step in, which allowed me [to pursue advocacy],” said Dalma.   

Since then, Dalma has met with state legislators in Albany and with Rep. Ritchie Torres (D-N.Y.) at the AIM Advocacy Forum and at his Bronx district office. She describes advocacy as a powerful antidote to the helplessness of caregiving. “As a caregiver, you feel powerless, because there’s nothing you could do to stop the progression of the illness… but when you’re walking around Washington, you feel very empowered.” After her most recent Advocacy Forum, she said simply: “I put on my comfortable shoes and I walk, but at least I don’t feel helpless. I feel powerful. I’m making an impact.”

Dalma’s team has also built a strong relationship with Rep. Torres and his office. Rep. Torres has cosponsored both the ASAP Act and the AADAPT Act — bipartisan legislation that reflects the priorities Dalma and her colleagues have brought to his attention in meeting after meeting.  

In one of those meetings, a staff member opened up to Dalma about losing her own grandmother to the disease — a moment that speaks to something Dalma has come to understand through her advocacy: the fight against Alzheimer’s and other dementia touches nearly every family, including those working the halls of Congress. The ASAP Act, which would accelerate access to dementia screening tests and was the top priority at this year’s Advocacy Forum, is one of the most urgent steps Congress can take to ensure people are diagnosed early and connected to care before the disease progresses.  

Dalma is also particularly passionate about advocating for the AADAPT Act, which would improve access to training for health care professionals caring for people living with dementia — something she wishes had existed when her family first got the diagnosis. She also grew support this year for state legislation on dementia training in New York.   

Dalma was set to attend her first Advocacy Forum in 2024, when her advocacy team was to be recognized as the Alzheimer's Congressional Team (ACT) of the Year. But three days before the event, her mother passed away. While she was unable to be there for the award acceptance with everyone, her teammates accepted the award and brought it back to New York to share with her.   

Staying connected to advocacy after her mother’s passing has been an important part of how Dalma has processed the grief. As a caregiver, she said she often had to suppress her emotions to stay strong — and after her mother passed, it felt like years of feelings came all at once. “I felt like still being connected as an advocate helped me process that 14-year experience, and the loss.” Being an advocate, Dalma added, “still connects me to the people who can really understand that experience.”   

That connection runs deep within her own ACT team. “I would say I was always a mommy’s girl. And that didn’t end as I got old,” Dalma said of her relationship with her mother. Her teammates share the same bond of daughters who have cared for their mothers with dementia. “The advocate group that I’m involved with... they get my experience. They understand, and they’re very supportive. We try to be very supportive of each other.”  

She continues because the need keeps growing — and because she knows what it feels like to be without support. “Once you get into advocacy, you realize you’re not alone, and there’s this big impact… not only with yourself personally and in your inner circle, but also overall in the state, in the country, there’s so many people going through this battle… There’s such a bigger picture.”   

If you’re ready to join Dalma and advocates across the country in the fight against Alzheimer’s and other dementia, become an advocate today.