MN Latino Alzheimer's caregivers balance tradition and modern pressures

Three people stand behind a couch while a man sits with a cat.
The Cachima family, from left, Mari, Carlos and Lisbeth, originally from Venezuela, are taking care of their 81-year-old father Porfirio Cachima, seated on the couch, who arrived to join them in 2017. Last year he was diagnosed with Alzheimer's. Like the majority of Latinos, for the Cachima family, the idea of putting him in a nursing facility was not an option.
Judy Griesedieck for MPR News

Last year, Carlos Cachima and his sisters Lisbeth and Mari Carmen began noticing that their 81-year-old father was forgetting how to do everyday tasks he once did easily, like heating a cup of coffee.

“There’s an electric rice cooker in the house. And he once took the lid off and took out the pot and put a cup of coffee in there and turned it on to heat it,” said Carlos Cachima.

The Cachimas’ father, Porfirio, is one of the estimated 12 percent of Latinos aged 65 and older diagnosed nationally every year with Alzheimer’s or related dementias, according to the Centers for Disease Control and Prevention.

He lives with Lisbeth and Mari Carmen and their children. During the day when they go to work, Carlos comes to stay with him since their father can’t be left alone.

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“It’s been very difficult for us. But up until now we have things under control in the sense that we’ve organized ourselves to care for him,” Mari Carmen Cachima said.

Carlos was able to work from home during the pandemic. But he worries what will happen when he has to go back to the office.

Resources to help families like the Cachimas exist, but sometimes they are difficult to find.

Latinos are one and a half times more likely to develop Alzheimer’s or dementia than their white counterparts, said Sherry Sanchez Tibbetts, director of diversity, equity and inclusion for the Alzheimer’s Association of Minnesota and North Dakota.

“We know that not everyone has access to the same level of health care, and that some communities are disproportionately impacted by the disease than others,” Sanchez Tibbetts said.

A report by the Edward R. Roybal Institute on Aging at USC said that by 2060, 21.5 million Latinos will be 65 or older. And of those, 3.6 million will have Alzheimer’s.

That means millions of family members will become caregivers.

In Minnesota there are an estimated 99,000 people with Alzheimer’s. And 170,000 unpaid caregivers. The numbers aren’t broken down by ethnicity.

According to the Roybal Institute, Alzheimer’s cost Latino families in the U.S. $14 billion in 2014. By 2030 it will be $30 billion. And $2.3 trillion by 2060. The costs include the loss of income when family members stay home to care for loved ones.

Alzheimer’s Association’s Sanchez Tibbetts said using nursing homes doesn’t work for everyone. The Cachimas say it would be a last resort.

Latinos don’t see themselves as caregivers, Sanchez Tibbetts said.

“They’re simply taking care of a loved one because of a moral family or cultural obligation,” she said.

In an attempt to address this and other cultural issues, the Alzheimer’s Association is working to make sure its resources are tailored for family members in this role, Sanchez Tibbetts said.

Maby Almiron, community outreach specialist for Trellis, a Twin Cities agency on aging, said while resources exist it’s still not enough.

She sees uneven treatment levels among Latino seniors.

“I can see the difference between immigrants who have health insurance and the people who don’t. I think the help is there, but I am not sure if it’s for everyone,” Almiron said.

She said Latino families may not know that respite care is available.

Almiron regularly visits and works with various senior centers — including the Centro Tyrone Guzman. Six years ago, the center began a program dedicated to seniors with Alzheimer’s.

The program focuses on low-income individuals including those without legal status, said Yoli Chambers, the adult and aging programs director at Centro Tyrone Guzman.

The center offers educational resources as well as a space for seniors with Alzheimer’s to do activities during the day, Chambers said.

“The caretakers get a break to do things they need to do,” she said.

During the pandemic, the services are offered virtually. 

With help from Trellis, Centro Tyrone Guzman staff were able to provide iPads to families so they could continue to work with the seniors.

Culture plays a huge role in the way Latinos see themselves when it comes to caring for a loved one with Alzheimer’s.

“We’ve seen that the vast majority of families we work with take on the role [of caretaker] because of the great love they have for the family member. We feel that they took care of us, so now it’s our responsibility to provide the care they now need,” Chambers said.

Lisbeth Cachima said she’d like to see the resources made available at the time a diagnosis is made, such as letting family members know what to expect.

She said the Alzheimer’s Association has provided important support.

“You can talk to someone. You can unburden yourself when you feel stressed,” Lisbeth Cachima said.

Finding respite care for their father remains a huge concern for the Cachimas.

“We’ve tried to see if someone can come to the house and care for him. But at the moment, he doesn’t qualify,” she said.

Although their father was granted legal permanent residency, the card and paperwork that provides the proof, is still in process.

They also worry that their father might wander off, especially as the weather turns warmer. “We fear he could get lost; that he won’t know which house is his or try to enter the wrong house,” Carlos Cachima said.

They’ve had their father wear a smartwatch to track him, Lisbeth Cachima said.

“But he’d take it off because he doesn’t like these new watches. He prefers his Casio with the hour hands,” she said.

Vicki Adame covers Minnesota’s Latino communities for MPR News via Report for America, a national service program that places journalists into local newsrooms to report on undercovered issues and communities.