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Central Coast residents share their experiences with Alzheimer's disease

Posted at 9:50 AM, Aug 10, 2023

Six-point-seven million Americans are living with Alzheimer's disease and while there’s no cure, the FDA recently approved a first-of-its-kind treatment — Leqembi — that could change the underlying course of Alzheimer’s.

Leqembi is the first traditionally approved drug that promises to slow the progression of the disease.

According to Laura DeLoye of the Association's Central Coast Chapter, “In the study of over a year and a half, [Leqembi] delayed the progression by 5.3 months, which might not seem like a huge difference in our lives, but it's huge for a person with dementia.”

KSBY spoke with two Central Coast residents who share their experiences with the disease and their hope for this treatment.

Rosalyn Rivera is a Santa Maria resident. Her father has had Alzheimer's disease for the last 15 years. He is currently in the late stages of the disease, in hospice care in Puerto Rico with the rest of her family.

“You know, I started this conversation 15 years ago with my dad, and the conversation was simple: there’s nothing we can do,” said Rivera.

Rivera's father was diagnosed with the disease at just 55 years old. Rivera reflects, "He was retiring from his career and starting to enjoy a new part of his life.”

She said, at first, her father was in denial, which delayed them getting treatment. “We dismiss very quickly the mild cognitive impairment. Especially in Latino communities — the type of conversation about mental health. It tends to be very uncomfortable.

Now 70, her father is in the very late stages of the disease. Rivera now reflects on what this new FDA approval could have meant for her family years ago.

“The fact that now we have a treatment, that if you start in the early stages, you can actually buy yourself more time,” said Rivera. "It could have meant my dad being part of my girls' graduation. He missed his two grandkids' high school graduation just because he couldn’t be there for us anymore.”

She adds, “It gets me angry. It makes me sad. I knew he was still full of life. He could have shared so many other things that are no longer available for us.”

Though it is too late for Rivera's father to qualify for the new treatment, she has gotten involved with the Alzheimer's Association as an advocate within the past few years to meet with legislators and push for access to these new treatments that are coming out. She says it is exciting because she wonders if she may be the next in her family to have the disease, and it would be wonderful to have different options in the future if that day comes.

Chris Broome from San Luis Obispo lost his wife Alyce to Alzheimer's this past March and remembers when her first symptoms appeared ten years ago.

“We had been on a fairly long vacation and I’d noticed that she was just not paying as much attention to detail. For example, she just couldn't pack her suitcase, which was very important at that time because we were taking a number of flights and very restricted on what we could carry,” said Broome.

Once Alyce was diagnosed, she and Broome were both practical in their approach to treatments.

“I was very fortunate that Alyce was not in denial, which unfortunately many people are. That helped tremendously in figuring out our path forward and how I could care for her," said Broome.

Broome stays realistic about the limitations of this newly approved treatment.

“It’s an effective break but it doesn't stop the disease,” said Broome. “If it were available 8-10 years ago, we could have had a better period at that time. Long-term, just slowing the progress isn’t enough."

Both Broome and Rivera agree — early diagnosis is key. And they hope this new drug will serve as a launchpad to better treatments and possibly a cure.

“What we really need is a medication or a treatment that can actually halt the progress. And then ideally, we need something that can reverse it so the patient can get their memory back,” said Broome.

Rivera is hopeful. “It’s a great beginning, because now with this approval, many others can continue leveraging on that research,” she said.

Here is a snapshot of how many people 65 years of age and older have Alzheimer's Disease in California and in our local counties:

CA Population Alzheimer's.png