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Alzheimer’s Advocate Dedicated to Educating His Community Shares His Story

Alzheimer’s Advocate Dedicated to Educating His Community Shares His Story
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February 16, 2022
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Joe Arciniega is passionate about both his Hispanic Texan heritage and the fight to end Alzheimer’s, the disease his father was diagnosed with at age 74. Joe’s dad passed away days after his 79th birthday.

After retiring from the technology business in 2005, proud Texan Joe Arciniega returned to his home state. “I had family in both Laredo and San Antonio, and when my wife and I were deciding where to live, I didn't think that my athletic, brilliant and talented father, who lived in San Antonio, would soon be affected by Alzheimer’s disease as we settled in Laredo.”

Joe’s father, a retired U.S. Marine, was a musician who played the requinto, a small Spanish guitar. “One day, this man who read five newspapers a day, watched all of the news channels and played music on a daily basis suddenly stopped,” Joe says. By the start of 2011, his father’s diagnosis was confirmed. 

Since then, Joe has been through experiences dementia caregivers are familiar with: the taking away of car keys, managing a loved one’s finances, moving them from home to dementia care. After driving 300 miles round trip from Laredo to San Antonio three times a week, Joe ultimately brought his father with him to Laredo. “Though we certainly loved each other, I’m a divorced kid of the ‘60s,” Joe shares. “My father and I weren’t close. Now I was showering, shaving, and dressing him, taking things to a whole other new level of intimacy. My father was a very dignified person, so everything happening to him was an assault on his privacy, and mine.” 

Today, Joe wants people living with this disease to have the respect they deserve. “My dad went from being ‘Mr. Arciniega’ to a man who could not speak for himself,” Joe says. “I want everyone to treat patients with the dignity they would prior to their diagnosis. I placed photos of my father in his prime in his room at memory care. The staff were shocked. They commented on his handsomeness, his accomplishments. It doesn't matter if you were a theatrical performer or a captain of industry; if you have Alzheimer’s now, you’re still who you were, you’re still you.”

A Family History

“I started going to ancestral events that involved my great-great-great-great grandfather Jose Miguel de Arciniega, who was twice mayor of San Antonio,” Joe says. In doing research on the generations before him, Joe discovered a paternal grandfather, who didn't raise his father. “I learned that he had died of Alzheimer's, and his two sons from his first marriage were also lost to the disease. Then, as my father battled Alzheimer’s, one of his oldest brothers was diagnosed. I went from thinking we had no connections to this disease to this stunning string of events.”

Through these revelations, Joe was able to meet members of his grandfather's other families. “I love knowing more about my family; tangible evidence, artifacts that survived history. I’m fascinated by that aspect of my heritage.” 

Older Hispanics are about one and one-half times as likely to have Alzheimer's or other dementias as older Non-Hispanic Whites. Bringing awareness of the impact of Alzheimer’s on the Hispanic population allows Joe to combine two passions into one. “I’m an advocate for the retelling of stories of Hispanics, especially in the state of Texas. Highlighting the prominence of Hispanics in our state and making the state and country a better place for Hispanic Americans and all families facing Alzheimer’s are now my priorities.”

Advocacy at Work

Joe lost his father to Alzheimer’s in January 2015. “This whole experience threw me,” Joe says. “It also lit my activism. I took on the role of Alzheimer’s Association Ambassador, a volunteer who serves as the main point of in-district contact for a member of Congress, for Rep. Henry Cuellar (D-Texas).”

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Congress passed the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer's Act, critical legislation to combat the Alzheimer's public health crisis. Now they must fund the law.

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After five years as his father’s caregiver, Joe didn't want anyone else to go through what he did — but he knew that many families were, and continue to be. More than 6 million Americans are living with Alzheimer’s.

“Alzheimer’s is a national health crisis,” Joe says. “That is why I supported and advocated for the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer's Act.” This bipartisan law created an Alzheimer's public health infrastructure across the country and focuses on implementing effective Alzheimer's interventions, such as increasing early detection and diagnosis, reducing risk, and preventing avoidable hospitalizations.

When the BOLD Infrastructure for Alzheimer’s Act was passed into law on December 31, 2018, Joe was among the Alzheimer’s Association advocates celebrating its victory. 
“It was difficult, pushing for the BOLD Act right after my father died,” Joe says. “I was so passionate about the legislation, I had trouble keeping my emotions in check. But it was my honor to be a part of the forces that saw it through.” 

Today, Joe is using his voice to ask Congress to fully fund the BOLD Act at $20 million a year, and increase Alzheimer’s and dementia research funding by $289 million in the federal appropriations budget for fiscal year 2022. 

“Alzheimer’s disease is on the ascent, not the descent, and all of our voices are needed. I’m proud to say that this cause has my voice until we end Alzheimer’s.”

Join Joe as an Alzheimer’s advocate. Learn more, and share how you use your voice in the fight to end Alzheimer's in the comments.

About: A storyteller at heart, in 2011, Joe began enacting historical dramatizations costumed as his great-great-great-great grandfather, Tejano Maker of Texas Jose Miguel de Arciniega. Joe performed at historical conferences and dedications, including at a San Antonio Tricentennial Event at Travis Park. Most recently, he presented a reenactment at the Alamo, after which the Alamo Trust accepted a portrait of Don Jose Miguel to be displayed in the Alamo Exhibit Hall. An Alzheimer’s Association national board member, Joe continues to advocate for the Association and educate on behalf of all Hispanic Texans. “The Makers of Texas were not just Crockett, Bowie, Austin, and Houston. They were also Navarro, Seguin, Losoya, Arciniega, and other Hispanic heroes. Their stories are finally being told.” Joe is a former technology executive who calls Texas his forever home.

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