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 Barbara Marquez of Sacramento, California and her large extended family, the devastating toll of Alzheimer’s is known all too well. It began with her maternal grandmother, Anastacia Marmolejo, who died from Alzheimer's disease in 1990. And then her mom, Florence Marquez, was one of five siblings out of 10 to pass away from Alzheimer’s. 

“After seeing how my Mom and her siblings handled my grandmother's care, it was like I watched the preview of the movie, but then I was in the movie,” said Barbara. "And then I was seeing it again and again when my cousins cared for my tios and tias."

Prior to Florence’s diagnosis, Barbara and her siblings had noticed their mom forgetting things and repeating questions. Barbara lived about two hours away from her mom, and on their regular phone calls they would discuss their plans for when Barbara was visiting next. “And then 10 minutes later, she would call again and say ’What are we going to do?’” said Barbara. 

Florence, who lived in the same house in the same neighborhood of San Jose for 50 years, lived at home until one frightening day when she got lost after visiting a friend. Florence drove around for a while until she stopped at a local gas station. 

“She went into the store and handed her wallet over to the clerk. She said, ’I’m lost. Can you help me find my way home?’ Luckily, she found somebody who was honest and helpful, and he called the police. My sister was a police officer at that time and she was on patrol…my sister walked in, and my mother was very comfortable, chatting away. She said to my sister, ’You’re a police officer. Do you know my daughter? She’s a police officer, too.’”

Shortly after, Florence moved in with Barbara in Sacramento. “She was with us for her final years,” said Barbara. “At the time I worked for the state, had a 30-year career in public health, and had raised two kids, so I felt like I could handle this. But it just overwhelmed me.”

Barbara faced the challenges experienced by so many dementia caregivers across the nation — identifying and paying for adult day care programs, keeping track of medical appointments and medications, all while trying to stay strong and patient for her mom. To manage everything, Barbara chose to retire earlier than she had initially planned, impacting her finances and pension. 

“My mom had [health] insurance,” said Barbara. “But the cost of caring is tremendous. You don’t plan on all the additional things that need to be provided. Nutrition supplements, the continence materials, adult daycare, and then my mom did spend the last year in memory care…Unless you had long term care insurance, which we didn’t have for her, it’s mind-boggling the costs associated with it.”

To help alleviate the financial impact of caregiving, AIM is supporting the bipartisan Credit for Caring Act. This important legislation would create a new, non-refundable federal tax credit of up to $5,000 for eligible family caregivers. As an Alzheimer’s Association and AIM advocate, Barbara is passionate about this bill. 

“The [Credit for Caring Act] will be a tremendous help. Anything would be a help, and it also gives recognition to the support that’s being offered by family members. I remember going to my tax preparer and saying, ’Why can’t I deduct some of these, or why can’t she deduct some of these?’...I think [the bill] will be a welcome relief to so many.”

Barbara’s road to advocacy began after she attended some of the Alzheimer’s Association care and support programs. “I have a master’s in public health and have done that type of work for a long time at the state level. But I really felt like advocacy was where I needed to go,” said Barbara. “We need the resources, we need involvement. Just like we put a man on the moon, we’ve got to address Alzheimer’s with the same sort of enthusiasm, dedication and energy.”

Soon after becoming an advocate in 2015, Barbara began meeting and working with her local Rep. Ami Bera (D-Calif.). 

“As a physician, I think he understood the disease. He also understood that people needed a lot of support,” said Barbara. Soon after becoming involved as an advocate, the Congressman and the local Alzheimer’s Association collaborated on a Brain Health Forum, an annual event that features a resource fair, which creates a venue for many local organizations to share information on much-needed assistance and services for individuals who are living with Alzheimer's and their caregivers.

“We’re going to be in our tenth year of this Brain Health Forum,” said Barbara. “Even though we’re making these differences at the national level, people’s health care is local. What does your doctor know about this? Or does your doctor know that Medicare made a change for a case management visit? Those changes only happen if people know at the local level, and so we need to not only work on the big picture stuff, we need to make sure it translates to local care.” 

Over the years, volunteering at this event has given her purpose while also helping her build a strong relationship with Rep. Bera and his staff. The Congressman has supported many of AIM’s bipartisan bills since being elected, including the NAPA Reauthorization Act and the Alzheimer’s Accountability & Investment Act. 

Barbara is not the first in her family to stand up and pursue change. Throughout her life, Florence took action and spoke out for her community. 

“She was very much a community organizer,” said Barbara. “My mom and dad bought a little house in east San Jose before it was Silicon Valley. We lived next to an apricot orchard and a walnut orchard. She was always speaking out on issues. She became an elected school board member. She did a number of things. She was a super volunteer. And she continues to be an inspiration to me and others.”

Barbara carries on that commitment to supporting her community, relentlessly pursuing a world without Alzheimer’s and other dementia for future generations through her advocacy. 

“Now I’m a grandmother of three beautiful granddaughters. When [I first heard] a world without Alzheimer’s, I was like, yeah, that would be really great,” said Barbara. “But now it gives a different meaning to it — it keeps you in the game.”

Learn how you can get involved and become an advocate like Barbara.