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‘Your life changes completely.’ Hispanics Endure Hardships Providing Alzheimer’s Care

From diagnosis to coping and caregiving, three Latinos share how the disease upended their lives

spinner image From left: Martha Villanigro-Santiago; Maria and William Rodríguez; Perla Castro
From left: Martha Villanigro-Santiago; Maria and William Rodríguez; Perla Castro
Jared Soares; Christian Rodriguez; Carlos Javier Ortiz

Every day, William Rodríguez shows his wife, María, a portrait on their bedroom wall of a newly married couple. He asks her if she recognizes the woman. María says yes, it’s her.

What about the man, Rodríguez asks. María, 79, looks puzzled. Rodríguez tells her that he’s the man, and that the photo was taken in New York City on their wedding day.

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“I tell her that I love her, and I tell her we’ve been married 52 years,” says Rodríguez, who is 75 and lives with his wife in Manhattan.  

The fact that she at least recognizes herself deeply moves Rodríguez. “For me, it reinforces the fact that she’s still there, she still has memories,” he says.

spinner image Maria and William Rodríguez in their home
Maria and William Rodríguez in their home
Photo by Christian Rodriguez

Rodríguez and María’s other loved ones started noticing changes in her behaviors about a decade ago, soon after she retired from a career as a kindergarten teacher. As is typical with Alzheimer’s disease, the symptoms appeared gradually. Rodríguez would call her from work at midday, for instance, and she’d say she hadn’t eaten. She only had an appetite for coffee, she’d tell him.

She stopped cooking, which she had always enjoyed. And she became forgetful. Then came the suspicions.

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She was convinced her sister was stealing from her, only for Rodríguez to find many of the items stashed away around their apartment. María had hidden them — keys, silverware, plates, brand-new eyeglasses — and forgot that she had done so.

“At first I didn’t catch on,” Rodríguez says, adding that the initial symptoms didn’t seem to point to anything serious. “Now everything clicks.”

About five years ago, at the behest of a niece, Rodríguez took his wife to a neurologist for testing. They conducted imaging of the brain and asked María a series of questions. At one point, the neurologist tested her ability to tell time. The clock-drawing test — which usually involves drawing a clock on a piece of paper with numbers, clock hands and a specific time — has long been administered by doctors to check for dementia or other types of cognitive decline.

“Here they are, asking a teacher of 40-some-odd years how to tell time,” Rodríguez says, “and she couldn’t do it. It was disheartening.”

The diagnosis and disease upended the Puerto Rican couple’s lives, including post-retirement travel plans. The two had ventured around the world during their marriage and had long talked about going on a river cruise in Europe after he stopped working at age 70 in the banking industry.

“It was not to be,” he says.

María Rodríguez is among the estimated 14 percent of Hispanics ages 65 and older who have Alzheimer’s or dementia, according to the Alzheimer’s Association. Many are diagnosed only when the disease is in a more advanced stage, for reasons that range from lack of health care access and misdiagnoses to cultural stigmas and the dismissal of symptoms (like memory loss) as a normal part of aging, says the association.

Getting diagnosed later is especially troubling because early detection of Alzheimer’s could potentially give Latinos access to more treatment options, including the opportunity to participate in clinical trials, a chance to make lifestyle changes to help preserve their cognitive function, and the time to plan for their financial and caregiving future with their families.

spinner image Perla Castro
Studies show that about 13 percent of Hispanics over 65 have Alzheimer's or another dementia. Perla Castro and her relatives take care of her mother Lesbia Castro, 71 who has been suffering with Alzheimer's since 2005. Perla and her family members started seeing some changes in her early 50s.
Photo by Carlos Javier Ortiz

Caregiving challenges force families to juggle priorities

Perla Castro, the eldest of four siblings, has had primary responsibility for her 71-year-old mother, Lesbia, for more than a decade, ever since she was diagnosed with early-onset Alzheimer’s at age 55.

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Castro, 47, is one of more than 11 million Americans — two-thirds of whom are women and 8 percent of whom are Hispanic — who provide unpaid “informal” care for people with Alzheimer’s or other dementias, according to the Alzheimer’s Association. As a whole, these caregivers provide more than 16 billion hours of care valued at nearly $272 billion.

Caregivers often rearrange their lives to look after their ill loved one, even if the patient has private nurses, home health aides or is in a long-term care facility. And while several relatives may chip in to help the patient, usually the caregiving disproportionately falls on the shoulders of one person.

It is a scenario Castro knows well. She says tensions arose among the four siblings as their mother’s symptoms worsened. Two of the siblings “live farther away, they have kids, the kids have sports, school. There are competing priorities.” ​​Her sister, who works full time as a nurse, helps take care of Lesbia and their father, César, who is 70, when time allows. A brother, who lives farther away, comes to the house once a week to help.

“We have our rotation,” says Castro, who was born in Guatemala and now lives in Chicago. “But I’m the one taking the primary caregiver role.”

After coming to the United States from Guatemala in 1986, Castro’s parents poured all their energy and attention into supporting their family and never saved for retirement or long-term care. That created a significant hardship when Lesbia reached the point of needing a level of constant care that the family, which had been covering out-of-pocket costs, could not afford.

So Castro decided to quit her full-time project management job and strike out on her own as a consultant. That way she could tend to her mother’s growing needs.

“I needed the flexibility,” Castro says of leaving the corporate world.

spinner image Martha Villanigro-Santiago
Martha Villanigro Santiago
Courtesy of Jared Soares

‘Never in a nursing home’: Latinos face criticism over caregiving choices

Martha Villanigro-Santiago, 62, also saw no choice but to leave her nearly 30-year career as an employment lawyer to manage the care for her mother, who is 86 and was diagnosed with Alzheimer’s nearly 10 years ago.


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Although her mother has been in a long-term care facility in Virginia only 10 minutes from where Villanigro-Santiago lives, overseeing her care and personally tending to her as often as possible consumes a great deal of time and energy.

“It just wasn’t going to work,” she says of trying to juggle the demands of caregiving and working full time. “I was driving myself crazy trying to produce what my boss wanted me to produce. I wasn’t feeling well.”

Her husband, Al, who is 71 and has a solid job as a mediator, convinced her that they would be fine if she resigned.

“My husband said, ‘We can do this,’ ” Villanigro-Santiago says, acknowledging his patience, understanding and support. “He is the only breadwinner in this family.”

Her mother, Carmen, had always prided herself on being independent, and she had embraced the hectic pace of New York City, where she lived by herself in a walk-up apartment. But about 10 years ago, Villanigro-Santiago, who by then had settled in Virginia near her younger sister, discovered that her mother was skipping medical appointments. She was also becoming repetitive.

“You would ask her something, she’d tell you and then she would say it again,” Villanigro-Santiago says.

In 2013, Villanigro-Santiago and her sister Patty, who is 59 and works in communications, pushed for their mother to be tested about her memory lapses. The result was grim. Their mother, who had immigrated to the United States from Colombia in the 1950s, received a two-punch diagnosis of Alzheimer’s and rectal cancer.

The sisters decided to put their mother in a nursing home in New York for her cancer treatment and visited her every weekend. By the end of 2013, they had moved her into the nursing home in Virginia. Neither sister had the living space or resources at home to properly care for their mom.

Like many Latinos, Villanigro-Santiago faced criticism for having her mother in a nursing home.

“I remember talking to an acquaintance. She was very nasty, very opinionated,” Villanigro-Santiago says. “She said, ‘I’m not going to do what you did and put my mother in a nursing home.’

“Latinos have this idea of ‘never in a nursing home,’ ” she adds with exasperation. “My sister and I made the decision because it was best for my mother.”

Indeed, the Journals of Gerontology noted that Latinos are less likely than non-Latino whites to use nursing homes and hospice care. The reasons include a lack of awareness about formal services, an inability to afford them, and the view that they have a duty to shoulder the care for their ailing relatives, the journal said. 

But even with significant help from her sister and the employees at the nursing home, caregiving never ceases to be a huge job, she says. She visits her mother at least three days during the week and on the weekends.

Whether over the phone or during a visit, Villanigro-Santiago constantly checks her mother’s food intake, hygiene and grooming, and emotional well-being, and makes sure she’s taking her medication. She insists on doing her mother’s laundry and cooking some of her favorite meals, dutifully delivering them to her.

“I pray and wonder, How much more can I take?” she asks. “I deal with it on a day-by-day basis.”

Her mother has stopped grooming, sometimes doesn’t eat the food her daughter brings her and, for the first time, forgot Villanigro-Santiago’s birthday this year.

Villanigro-Santiago was not rattled by the unacknowledged birthday. Instead, she is grateful for the things her mother remembers.

“I’m blessed she still remembers my name,” she says.

‘In total denial’: When accepting an Alzheimer's diagnosis is difficult

Perla Castro’s parents took a trip back to Guatemala several years ago for a three-month stay to see if their dream of returning there to live was feasible. That’s when the gravity of Lesbia’s condition, which had been misdiagnosed as depression for years, showed itself. Lesbia sometimes thought she was back in Chicago and would get lost in their small apartment, not knowing the way to the bathroom or bedroom.

“It was very hard,” Castro says. “This was a reality check. We realized what a monster this condition was.”

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Many relatives of those with Alzheimer’s report an unwillingness by some in the family to accept the diagnosis, even when it’s medically documented. Some 57 percent of Latinos see even “a significant loss of memory or cognitive abilities” as a natural result of aging, says the Alzheimer’s Association.

Even Castro’s father, César, rejects the notion that his wife has Alzheimer’s.

“My father is in total denial,” Castro says. “He’s waiting for a miracle. He retired to take care of her. He thinks we’re exaggerating, and that she’ll get better.”

spinner image A family photograph of Cesar A. Castro (left) and Lesbia Y Castro (right)
Family photograph of Cesar and Lesbia Castro. Lesbia, 71, was diagnosed with Alzheimer's in 2005. Her family started seeing signs of her Alzheimer's around her early 50s.
Photo by Carlos Javier Ortiz

Lesbia, who lives with César and her other daughter in a home Castro owns, receives care from nurses several times a week and occasionally is seen by a doctor. Medicare covers some of the cost. She and her siblings once considered placing their parents in an assisted living facility, but decided against it after realizing that both could not be together in the same place, because they require different levels of care.

“We have caregivers we pay for out of pocket,” Castro says. “But it’s still not enough. You need care 24 hours a day, 365 days a year.” She adds, “If not for Medicare, I’d be bankrupt.”

Castro is not alone. In 2022, Alzheimer’s and other dementias will cost the nation $321 billion. This amount does not include the nearly $272 billion in unpaid caregiving. Medicare and Medicaid are expected to cover $206 billion, or 64 percent, of the total health care and long-term care for Alzheimer’s and dementia patients, while out-of-pocket spending is expected to be $81 billion, or 25 percent of total payments, according to the Alzheimer’s Association’s “2022 Alzheimer’s Disease Facts and Figures” report. The average total lifetime cost of care for someone with dementia is an estimated $377,621 in 2021 dollars.

The enormity of the responsibility is overwhelming, says Castro.

“It’s like I have a baby, someone who depends on you completely,” she explains. “Your life has to be built around caring for this person. Your life changes completely.”

She adds, “It’s taken a lot from everyone.”

‘You have to want to persevere.’ Caregivers find ways to cope

Villanigro-Santiago says she deals with her mother’s Alzheimer’s diagnosis by living in the moment and being resilient.

“Someone told me once ‘Don’t expect the worst, don’t expect the best. Don’t go in with any expectation,’ ” she says. “My mother leads, I go with the flow.”

William Rodríguez went through a rough period with his wife, María, after he retired and her personality changed. She became belligerent toward him at times. She would accuse of him of infidelity and often stayed up during the night, speaking to him, depriving him of sleep.

“It would be 3 a.m., and she’d be talking,” he says. “She wanted to make sure I didn’t sleep. One time I just got in the car and spent an hour in it so I could take a nap. It was like 2 a.m.”

The paranoia and aggression stopped when a geriatric psychiatrist prescribed her sedatives that calmed her and helped her sleep at night.

Home health aides come each day from 9 a.m. to 6 p.m. to tend to María, who several times has developed infections that have landed her in the hospital and required physical therapy and other rehabilitative care. Medicare covers the cost of medical equipment, such as María’s hospital bed and wheelchair, but not the aides, which the Rodríguezes pay for out of pocket.

In addition, after his wife was diagnosed, Rodríguez joined a Latino caregivers support group called Café con Leche. He treasured learning from caregivers whose loved ones were at different stages of the disease.

“I said to myself, ‘Wow, I’ve got it great,’ ” he says.

As María continues to decline, Rodríguez focuses on the glimmers of the woman he fell in love with. He has framed photos of her in her youth around his computer.

“I look at María now, and I still see the woman in those photos,” he says.

When their niece or nephew visit, he says, “she brightens up.” Rodríguez relishes such moments, seeing them as signs that she’s still “there,” he says.

“It can be emotionally difficult when you think about what could have been,” Rodríguez concedes. “It’s one of the most difficult things that can happen to a family. You have to want to persevere. You basically have to say, ‘I have to do this for him or her.’ ”

Alzheimer’s: The Hardest Hit

Age continues to be the leading risk factor for developing Alzheimer’s disease. As the U.S. population continues to grow more diverse, so will the group of older adults who will be at risk in the coming years, with Hispanic Americans being particularly hard hit by this disease.

  • More than 6 million Americans are living with Alzheimer’s, currently the fifth-leading cause of death among individuals ages 65 and older in the United States.
  • By 2050, the number of people ages 65 and older with Alzheimer’s is projected to reach 12.7 million. 
  • Currently, 19 percent of Black and 14 percent of Hispanic adults ages 65 and older have Alzheimer’s, compared with 10 percent of non-Hispanic white older adults.
  • Between 2018 and 2040, projections show the Black older adult population will increase by 88 percent, while the Hispanic older adult population will increase by 175 percent, making Latinos the group at highest risk of developing the disease.
  • American Indian, Native Alaskan and Pacific Islanders had a similar incidence of dementia diagnosis as Hispanics, while Asian Americans had the lowest dementia incidence of all groups. Japanese Americans had the lowest incidence of dementia within the Asian American demographic.

Source: Alzheimer’s Association’s “2022 Alzheimer’s Disease Facts and Figures

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