Santa Maria Family Deals with Early-Onset Alzheimer’s as State Passes New Legislation
Tony and Kori Gonzales Speak on Life Changes, Health-Care Accessibility, and Stigma of Alzheimer’s
Santa Maria resident Tony Gonzales had spent much of his life multitasking and fast-talking. For more than 20 years, Gonzales was known as “The Chief,” a popular radio personality, before taking on other executive positions in real estate and banking. Through each of his jobs, Gonzales would be on the go — taking meetings, fielding emails, and making moves — and he prided himself in taking on all these responsibilities at once.
When he reached his mid-forties, he and his wife, Kori Gonzalez, started to notice some small “slips” in his ability to multitask, subtle at first but soon impossible to ignore. “I thought I was stressed and too tired,” he said, “I kept telling my wife, ‘Something else is wrong.’”
After dozens of doctors’ appointments spanning months, Gonzales learned what was happening — early-onset Alzheimer’s. “In the beginning, that was the hardest part,” he said, describing what he called a “fight against medical staff” who seemed hesitant to attribute his symptoms as dementia-related.
Gonzales said he had a feeling, due to a family history of dementia, though he said his family — like many other Hispanic families — had a tendency to brush off the disease or else hide the symptoms. “It was kind of like a secret,” he said, “something to be embarrassed about.”
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With the diagnosis, the Gonzales family had to rethink their future as one of more than six million Americans with the disease. Tony and Kori had planned on growing old together, retiring and spending more time walking, reading, or exercising. With Tony now living on borrowed time, the future became the present: Tony retired, and Kori took time off as a special education teacher to tackle his diagnosis head-on, and the two made significant life and health changes, including Tony losing 142 pounds in less than a year.
The family became advocates with the Alzheimer’s Association’s Central Coast Chapter and began to push for accessibility for those dealing with the disease — especially for the Hispanic community, which research shows will be up to 1.5 times more likely to be affected by the disease in the next 20 years. Currently, the disease is the third leading cause of death in the state, behind only heart disease and cancer.
“This is a very costly disease,” Kori said, “we are learning more and more how devastating this is for families.” One of the toughest issues, she said, was dealing with medical costs. Some families are forced to sell their homes, and some, especially those with early-onset, have to wade through a lot of bureaucracy in order to get the assistance they need.
“That’s what angers me with insurance and doctors,” Tony said, “If I’ve got 10 years left, I’m losing memories that are never coming back.” The paperwork, he said, is also difficult for those with Alzheimer’s. “The process of the paperwork … sometimes I can’t even tell what day it is, and they want me to do it in one day.”
Tony has always been a “glass half full” type of guy, and he and Kori have learned to enjoy new hobbies together. Where he used to find joy in executive life — “I love a good spreadsheet,” he said — now he finds peace in coloring books and puzzles or reminiscing by watching old TV and movies on YouTube. “It’s comforting, like a blanket,” he said.
Kori has always been “a rock,” he said, but with this diagnosis, she has been forced to step up for him and for herself. She joined him in his diet and life changes, and she reached out for counseling so she could be there for Tony and their children. “I said, ‘Okay, I might be the only parent they have, so I have to do everything in my power to be as healthy as I can in mind body and spirit,” she said. “When you’re dealing with a life-and-death circumstance, it completely changes the way you look at life and it completely changes your value; it’s really the people in our life that are the treasures.”
Leigh Cashman, a Santa Barbara resident who serves on the board for the Alzheimer’s Association Central Coast Chapter and is also part of the Alzheimer’s Women’s Initiative committee, got involved with advocacy after losing her father to the disease in the mid-2000s.
For her father, like with the Gonzales family, it took two years of doctors’ visits until they diagnosed his mild cognitive impairment. Cashman called the process “extremely frustrating” and said that “it just made sense” to get involved.
Since then, she has sat in on meetings with state and local leaders, from Lois Capps to Representative Salud Carbajal to celebrity advocates like Maria Shriver — who earned the Alzheimer’s Association’s first-ever Lifetime Achievement Award in 2017 for using her voice to bring much-needed attention to women, brain health, and Alzheimer’s prevention.
With the big names also comes more funding; the National Institutes of Health is expected to have spent $3.2 billion on Alzheimer’s research in 2021. This funding is important, Cashman said, because research may be on the brink of something big, with at least one drug earning accelerated FDA approval in 2021.
Gov. Gavin Newsom has been “a champion,” she says, and State Senator Monique Limón has been “instrumental” in pushing legislation forward.
“She is an absolute rock star and a huge champion for Alzheimer’s and dementia issues,” said Nina Moussavi, the regional Public Policy and Advocacy Manager for the Alzheimer’s Association.
Limón’s State Bill 861 is one of three pieces of dementia-related legislation passed in 2021, along with Assembly Bills 1618 and 2583. The assembly bills improve “public health response to Alzheimer’s” and provide law enforcement with more training for dealing with dementia; Limón’s state bill expands access to dementia care, “breaking down the barriers,” Moussavi said, for those who have struggled to receive care.
This would include providing help through groups like the Promotores Network, which provides care and support to the Latino community in Santa Barbara County. These three bills are among the wave of dementia-related legislation being passed across the country, including at least nine state bills from Colorado, Idaho, Indiana, and Washington.
For more information, visit the Alzheimer’s Association Central Coast Chapter webpage.
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