“Our America: Unforgettable,” an hour-long special produced by ABC Owned Television Stations in partnership with ABC News, takes a look at what life is like for families facing Alzheimer’s, as well as the alarming data of the disease through a Hispanic and Latino lens.
Watch “Our America: Unforgettable” in the video player above.
Alzheimer’s is the most common type of dementia. According to the Centers for Disease Control and Prevention, it is a progressive disease beginning with mild memory loss and possibly leading to loss of the ability to carry on a conversation and respond to the environment. It involves parts of the brain that control thought, memory, and language.
Currently, there are more than 6.7 million Americans living with Alzheimer’s in the United States. And that number is expected to grow to 12.7 million by 2050. According to the 2023 Alzheimer’s Disease Facts and Figures report, 13% of Hispanics who are 65 years or older have Alzheimer’s or another dementia. In addition, Hispanics are 1.5 times more likely than white people to develop Alzheimer’s and other dementia.
“Is this because of cultural factors? Is it because the patient does not speak the language? There are many factors to take into account when evaluating a Latino patient,” said Carmen Carrión, a neuropsychologist at Yale Medicine.
Described as the long goodbye, “Unforgettable” goes inside the homes of two families whose lives have been disrupted, devastated, and redirected by Alzheimer’s, yet doing all they can to face it with courage, compassion and dignity.
“Alzheimer’s has been the biggest battle in my life,” said Aurora Ramirez, a caregiver for her mother, Sofia Martinez.
Raised in Maywood, Calif., she’s an only child raised by her single mother.
“It started with hallucinations,” Ramirez said. “I would come home from work. And she would tell me, she would take me to her bedroom. And she would say, two ladies came by today, we’re in my bedroom, organized my closet and left me some money. And then the next day, the same thing.”
Feeling powerless and scared, she took her mother to get evaluated. In Dec. of 2016, Martinez was diagnosed with the disease.
“I didn’t have a clue,” said Ramirez while recalling the diagnosis period. “I didn’t know what Alzheimer’s was. I’ve never heard of it. So now it’s like what do I do?”
According to Alzheimer’s & Dementia: The Journal of Alzheimer’s Association, Latinos in the U.S. living with Alzheimer’s and other dementias would increase by more than five times within the next 40 years, the largest increase among racial and ethnic groups. By 2060, there will be 3.2 million Hispanic Americans living with the disease.
From Hartford, Conn., the Miranda family never expected dementia would affect someone in their home.
“We’ve been together for 48 years, we’ve been married 43 years,” said Evelin Miranda of her husband, Eddie Miranda.
She is from Puerto Rico, he is from the Dominican Republic. The longtime couple met during their childhood and bonded over their love for community service.
“At that time, I had met Eddie at summer school and he was studying to become a priest,” said Miranda. “I wanted to be a nun.”
The couple married in 1980 and had three children – Eduardo, Miguel and Antonio.
When Eddie was diagnosed with the disease in 2018, the matriarch left her nursing career to become her husband’s full-time caregiver.
“I don’t think ahead, I just try to enjoy every second every minute that I have with him and make the best of it,” said Miranda. “So when the time comes, then I’ll deal with it a different way. But right now I’m just taking one day at a time.”
ABC Owned Television Stations and ABC News spoke with leading experts and scientists across the country are working to close the gaps in Alzheimer’s disease.
“There’s no clear answer that says this is why Latinos are at risk of developing Alzheimer’s,” said Maria Aranda, professor at the University of Southern California and executive director of USC’s Edward R. Roybal Institute on Aging.
“The only way that we’re really going to understand how or why it manifests differently among diverse communities is by having these diverse communities Latinos Hispanics participating in the research and clinical trials,” said Carrión. “But we have to do a better job of getting that message out there.”
“Alzheimer’s is a neurologic disease, meaning it’s a disease of the brain and nerves that affect memory and cognition, our ability to remember things our ability to learn new things,” said Zaldy Tan, M.D. and dementia specialist at Cedars-Sinai.
Some early signs and symptoms of Alzheimer’s disease include difficulty with familiar tasks, confusion around dates or times, and worsened judgment.
Families witness losing their loved on little-by-little. And depending on the stage the patient is facing, it’s a disease where eventually the person no longer recognizes their loved ones.
“I used to call her mom and she just wouldn’t respond,” said Ramirez while recalling when her mother stopped recognizing her. “And then I said, okay. I tried calling her by her name, Sophia, and she responded and that was hurtful. That was that was one of the hardest things to accept.”
“The difference between Alzheimer’s disease and dementia is that dementia often refers to an umbrella term dementia are changes in a person’s thinking abilities that affect their everyday functioning,” said Carrión. “There are so many different conditions that can lead to dementia. Alzheimer’s disease is only one of those conditions. It’s the most common one.”
According to Carrión, Alzheimer’s disease often comes with changes in memory, language, sometimes visual spatial abilities that affects the person’s thinking abilities over time and ends up affecting their ability to take care of themselves.
“Generally speaking, we know that risk factors fall into two broad buckets,” said Christian Salazar, an epidemiologist and neuro-scientist at UCI MIND. “In one bucket, we have the modifiable risk factors. Those are factors that we know that if we change, we can reduce the risks of disease. In the other bucket are non-modifiable risk factors. These are risk factors such as age or genetic risk factors.”
Dr. Zaldy Tan says that although we are all living longer due to advances in science and public health, one area that needs more attention and resources and should be addressed is the nation’s collective risk of losing our cognition from Alzheimer’s disease.
“You’re looking at an adult that was able to do things for himself and all the sudden you’re repeating yourself over and over,” said Miranda of her longtime partner. “Eddie speaks two languages English and Spanish. Now with this disease, I have learned that he’s back to his main language, which is Spanish.”
Dr. Tan says that when the disease progresses, the first thing that goes are the ones that we learned last. A person’s primary language is hardwired in our brain, and therefore, the most resistant to the ravages of Alzheimer’s disease. So it’s not unusual for some people to revert back to their primary language, even though they speak a second or third language.
“I do try very hard not to generalize because Hispanics or Latinos, very, very diverse group,” said Carrión. “We do tend to share that familismo, that tendency to rely very heavily on community and family. And it’s just more of a collectivist mentality or culture.”
The experts interviewed in this special agree that it is imperative for communities of color to participate in clinical trials and other types of research, such as observational research.
Having diverse cohorts in study samples would improve understanding potential underlying mechanisms under the dementia umbrella.
And when it comes to treatment and medicine, although there is no cure, many experts are hopeful we will soon have a major breakthrough in medicine.
Aducanumab and Lecanemab are the first drugs that may slow the disease down, not just treat symptoms, and there are other investigational drugs in the development pipeline.
“We are at the cusp of revolution in understanding better treatments for Alzheimer’s disease,” said Salazar.
There are also tools people can utilize to improve their health and potentially lower their risk of getting dementia, such as physical activity, good sleeping habits, no smoking, staying socially engaged and keeping their minds active, as well as seeking a support group and therapy.
“I’ve matured a lot. I’ve learned a lot,” said Ramirez of her journey as a caregiver for her mother. “I am a better person because of it. It has been a blessing because along the way, I’ve also encountered a lot of love from people.”
“I want him to know that I will be here with him until the end,” said Miranda of her husband. “Because we love each other.”
Watch “Our America: Unforgettable” wherever you stream: Fire TV, Android TV, Apple TV and Roku.
RESOURCES
Alzheimer’s Association
Leading voluntary health organization in Alzheimer’s care, support and research. Local chapters located in Fresno, San Francisco, Los Angeles, Raleigh, Illinois, Philadelphia, New York City and Houston.
alz.org
Alzheimer’s Association Los Angeles
alzheimersla.org
alzheimersla.org/for-families
USC Southern California Caregiver Study
Seeking volunteers to participate in a research study for persons caring for family members with memory loss, dementia, or Alzheimer’s.
If you are over 18 years old, able to read English, and can attend online classes, call: 213-740-1887.
For more details, visit: roybal.usc.edu/socalcaregiver, youtube.com/USCCAREGIVERSTUDY
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