The staggering cost of the Alzheimer's drug 0:54
(CNN) —
Sarah Rodriguez spends most of her day multitasking.
She goes from seeing her mother on remote cameras to talking via video and phone calls with doctors and assistants to arrange proper care for the 67-year-old woman.
The life of this 40-year-old woman in Virginia has been like this since her mother was diagnosed with Alzheimer's two years ago.
Rodríguez has become the long-distance caregiver for her mother, Sara González, who lives in Mexico City.
She says that her mother and other members of her family once believed that memory loss was a normal part of aging.
Before the diagnosis, Rodriguez said her mother increasingly forgot about doctor's appointments, how to count money and little things like her favorite type of cookie.
Rodriguez noted that things were worse than she thought after her mother came to visit her in Virginia during the pandemic.
Gonzalez had drastic mood swings and couldn't remember phone numbers.
It was then that the reality that her mother, as she knew her, was slowly fading away, and her mother's Alzheimer's was something she was forced to face.
Sara González was diagnosed with Alzheimer's two years ago.
After realizing how long it took her mother to find help, Rodríguez began working on the Alzheimer's Association's Latino Outreach Committee to help other Latino families recognize the signs of the disease and its implications.
The committee's mission is to help Latinos understand and overcome cultural barriers to care, in the same way that Rodriguez eventually did.
"I'm doing this because I love my mom and I really want to be a big part of her new journey," she told CNN.
"I really want to help the Latino community to show them that they are not alone and that they are not the only ones fighting Alzheimer's disease."
Rodríguez's journey with his mother is becoming increasingly common among Latino Alzheimer's patients and their caregivers.
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Alzheimer's Association researchers recently published a journal article titled "Addressing Disparities in Dementia Risk, Early Detection, and Care in Latino Populations."
The findings showed that Latinos are at increased risk for Alzheimer's and other dementias due to barriers, including the perception of memory loss as normal aging;
limited access to high-quality care;
and being underrepresented in research and clinical trials.
These barriers come at a time when the Latino population is also growing at an amazing rate.
Latinos accounted for 51.1% of the country's growth, reaching nearly 19% of the US population, according to the US Census.
The barriers also pose a threat to the health and well-being of the nation's largest minority group.
Latinos are projected to have the highest increase in Alzheimer's disease and related dementias over the next 40 years compared to other ethnic groups, according to the Alzheimer's Association.
Researchers estimate that the disease will affect 6.3 million non-Latino whites, 3.2 million Latinos, and 2.2 million African Americans by the year 2060. Although Latinos are not expected to have the highest number, they have the higher increase over time.
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Dr. Maria Carrillo, chief science officer for the Alzheimer's Association and author of the report, told CNN that the group wants more people to better understand the barriers Latinos with Alzheimer's face.
“Learning how to address the challenges that Latinos face in health care and dementia will really be key to understanding how we can ameliorate the potential tsunami of changes that are yet to come that are challenging us across the country today,” Carrillo said.
Facing multiple barriers
Despite making up about 19% of the population, Latinos make up less than one percent of participants in National Institutes of Health clinical trials, according to the Alzheimer's Association.
More than 10 years ago, the organization created a program that links Alzheimer's patients to clinical trials.
Recently, the nonprofit organization created a Spanish section of the program that includes bilingual agents, inclusive clinical trials, and materials in Spanish.
The report's authors recommend that researchers adjust their recruitment strategies and standardize procedures for Latinos enrolled in clinical trials.
Rodríguez said her mother often faced language barriers and discrimination when attending medical appointments.
She noticed that some people ignored her mother, spoke too slowly or stopped visiting her, Rodríguez recalled.
Carrillo echoed Rodríguez's sentiment that language and cultural barriers are often barriers to quality care.
Another barrier is access to adequate insurance coverage.
Sarah Gonzalez
The Alzheimer's Association hosts an annual symposium called "Latinos and Alzheimer's," which brings together diverse groups to discuss research that is essential to addressing the health disparities that have put Latinos at higher risk for dementia.
Carrillo said the goal of next month's symposium is to understand what progress has been made and what more remains to be done.
The number of Latino adults suffering from Alzheimer's and related dementias could rise from an estimated 200,000 today to about 1.3 million by 2050, he said.
That number worries Carrillo personally and makes her think about the future of her own family.
Alzheimer's has deeply affected both her and her husband's family.
Carrillo's mother-in-law was the third of four siblings to be diagnosed, along with her husband's grandfather.
She now worries that one day her husband may be diagnosed, along with any of her four children.
Although having a parent or sibling with Alzheimer's doesn't mean you'll develop it, it does increase your risk, according to Alzheimer's Association researchers.
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“This is something that is very close to me.
My children asked us how they will be affected and what their future will look like,” she told CNN.
"That's an important factor for everything I do."
The growing number of Latinos diagnosed with Alzheimer's will have the fewest resources to manage it, according to a report from researchers at the University of Southern California and LatinosAgainstAlzheimer's, a coalition of Hispanic organizations that focuses on raising awareness of the disease as a health problem. urgent health.
The study, titled "Latinos and Alzheimer's Disease: New Numbers Behind the Crisis," projected the costs for US Latinos living with Alzheimer's disease through 2060. The Economic Impact of Alzheimer's Disease in the Latino community it will reach a cumulative amount of US$2.35 billion by 2060, according to the study.
Costs include medical bills, long-term care, informal unpaid care, and lost income after they are no longer able to work.
"Families can expect to spend $41,000 to $56,000 a year on dementia-related costs," such as prescription drugs and care services, but Latino families "are largely unprepared for financial hardship," it found. the study.
Median family income is $38,000 for Mexican American families and $36,000 for Puerto Rican families, the two largest Latino subgroups.
Since Latinos are more likely to experience poverty compared to other communities, these numbers reveal that Latino families could be in debt due to the cost of caring for loved ones with Alzheimer's.
In 2021, total payments for all people with Alzheimer's or other dementia were estimated at $355 billion, according to the Alzheimer's Association.
Costs are also estimated to rise to more than $1.1 billion by 2050.
Jason Resendez, executive director of LatinosAgainstAlzheimer's and author of the report, told CNN that his organization pushes for investment in economic policies to address the economic consequences of Alzheimer's.
The price you charge caregivers
Resendez also said that many caregivers of Latinos with Alzheimer's end up being family members, as many live in multigenerational households, households that include two or more generations of adults.
About 27% of Latinos lived in a multigenerational family home in 2016, according to US Census data.
“That affects a family's ability for economic security and economic mobility,” Resendez said.
"It affects people's ability to stay in the workforce."
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66% of African American and Hispanic caregivers say their caregiving responsibilities affected their ability to work during the pandemic.
When Rodríguez became a long-distance caregiver, she put her career on hold to spend more time caring for her mother in Mexico City.
She knew that if she worked full time, she would constantly check her phone for updates on her mother's care and call her often to make sure she was okay.
Since her mother has no pension or income, the support comes from Rodríguez's husband and her sister, Sayra Rodríguez.
"I'm doing this because I love my mom and I really want to be an important part of her new journey," said Sarah Rodriguez, pictured with her mother Sara Gonzalez.
"It's hard because you don't realize how much money you need until you start paying expenses," he said.
"If something happens to her in the United States when she visits me, we would have to pay all the expenses out of pocket."
Rodriguez currently runs a small bakery business, but doesn't think he'll consider a full-time job anytime soon.
He said that he wants to focus on spending time with her mother and taking care of her as much as he can from Virginia.
Constantina Mizis, executive director and president of the Latino Alliance for Alzheimer's and Memory Disorders, says many caregivers need more support services to help them financially and emotionally.
She runs a non-profit organization that aims to educate and engage Latino caregivers.
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From 2018 to 2020, the organization connected with more than 1,000 caregivers and people with dementia and reached nearly 37,000 people with information about Alzheimer's disease and the impact on the caregiver, Mizis said.
"Alzheimer's disease is the only disease where the person dies twice," Mizis told CNN.
"The first time is when you don't get recognized. There's the emotional part of caring for a loved one who is sick, so it can mean a lot to caregivers."
Resendez told CNN that the federal government needs to increase investment in communities that are disproportionately affected by Alzheimer's and related dementias, including areas like Miami-Dade County, Florida, and Humphreys County, Tennessee. .
He also said that conversations about brain health and prevention are also vital to addressing the burden of Alzheimer's, which would help spread awareness.
"As Latinos, I think we don't understand what's going on with them, but there's a lot of information out there," Rodriguez told CNN.
“It is better that your loved one receives the diagnosis, medication and treatment.
We are not alone and it is always good to ask for help.
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