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Planning ahead for the costs of Alzheimer's disease in Florida is key

Rosalva Reyes has Alzheimer's disease. She lives at home thanks to a network of help, including her children, Vanessa and Richard.
Family photo
Rosalva Reyes has Alzheimer's disease. She lives at home thanks to a network of help, including her children, Vanessa Reyes and Richard Cheney.

Miami-Dade has the nation's highest prevalence of Alzheimer's. But with monthly memory care costs in Florida averaging at more than $8,000 per month, one family talks about the difficult choices to come.

Rosalva Reyes sees her children in South Florida many times a week, but sometimes she struggles to recognize them.

“What are the names of your mother and father? Who are they?” the 83-year-old asked her daughter, Vanessa Reyes, on a recent visit to her home in Palmetto Bay.

“My mom and my dad? My mom is Rosalva, my dad is Juan,” Vanessa said patiently. “Now do you remember that you’re my mom?”

Alzheimer’s disease is the most common type of dementia. Over time, this brain disorder destroys memory and in most cases will eventually make it difficult to carry out simple tasks.

Fortunately, Rosalva still has full control of her body. She can shower on her own and even go to Zumba lessons regularly. She lives in her own home, which doctors say is the best option for people with Alzheimer’s who can do it.

She worked for many years as a federal immigration officer, and because of that receives a monthly pension. Alongside Social Security, it is enough to cover the monthly expenses needed for her to stay in the same home she’s lived in for decades.

But her son, Richard Cheney, who manages Rosalva's finances, is very aware that even that would not be even close to enough to cover the costs of an eventual move to a specialized care home.

“If she’s gonna go to a memory care place, that's going to wipe all of it out," he said.

Long-term memory care in Florida could cost more than $100,000 a year. On average, receiving residential Alzheimer's care averages about $8,349 per month in the state.

Rosalba, middle, has Alzheimer's Disease. She lives at home thanks to a network of help, including her daughter, Vanessa, left, and Richard, her son.
Family photo
Rosalba, middle, has Alzheimer's disease. She lives at home thanks to a network of help, including her daughter, Vanessa Reyes, left, and Richard Cheney, her son.

Because of these prices, Rosalva's children are considering facilities in Peru, where she grew up and has family, if the time comes that she will need professional care around the clock.

“It's a lot cheaper,; it's like half the price, and the places are very nice,” Richard said. “Top of the line in Peru.”

The problem is, the siblings know they wouldn’t see her as much so the decision won’t come easily.

“If she goes over there, it’s like saying goodbye,” said Vanessa. They know that time is slipping by and they may have to decide soon.

In the meantime, they depend on a network of paid help and volunteers.

“We got Josue, we got Maite, Vanessa, me, Jose, Nilda, Luisa, Marcia and Marcia's sister once in a while,” Richard said, listing how many people it takes to keep their mom living safely at home. “So that's nine, 10 people right there.”

The children also pay for a security camera to monitor their mom, who’s been waking up in the middle of the night. For primary caretakers who do live with their loved ones — they might have other costs.

“If the caregiver is working, are they having to take time off of work? Are they having to reduce their hours? That's going to affect their finances as well,” said Jennifer Braisted, the director of government affairs for the Alzheimer’s Association in Florida.

Push for increased funding

The Legislature convenes again in Tallahassee on Jan. 9, and during this session, Braisted and her colleagues plan to push state lawmakers to increase funding for Florida’s Alzheimer’s Disease Initiative. One of its roles is to help pay for respite care to give family members a break — though the program has a wait list of about 17,000 people, Braisted said.

Women are often the caretakers and are more likely to develop Alzheimer’s than men. Advocates like Braisted say people need to talk about Alzheimer’s more so it doesn’t catch people by surprise.

The Alzheimer’s Association in Florida also wants the Legislature to set dollars aside for a statewide awareness campaign. About 585,000 Floridians 65 and older are living with Alzheimer's, with communities of color disproportionately impacted.

“Black Americans are twice as likely to develop Alzheimer's. Hispanic Americans are 1½ times more likely, so we want to be sure that there isn’t that stigma, they’re having these discussions with their doctors.” Braisted said.

People who don’t have a pension like Rosalva or other money coming in regularly should plan ahead, said Cindy Hounsell, the president of the Women’s Institute for Secure Retirement.

Medicaid covers some costs for qualifying, very low-income Florida residents. Others may need loans, reverse mortgages, assets or savings.

“We have something called the caregiver hub on our website because a lot of times with caregiving what happens is all of a sudden you're at work and somebody calls you and says, ‘Your mother just whatever,’ and you don’t know where to start,” Hounsell said.

She urges people — especially women — to talk to their mothers and grandmothers and find out what savings they have. And make sure they are not putting themselves in danger by, for example, giving their credit card information to scammers.

“It's important for people to build their own capacity with what they know or ask other people, ‘Hey, did you do this?’ " Hounsell said. "People have to be the best that they can, and they have to realize this is hard for everyone. But there's a lot of help.”


For more on Alzheimer's disease help, visit these online resources:

This story was produced with support from The Gerontological Society of America, The Journalists Network on Generations and The RRF Foundation for Aging. 

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Verónica Zaragovia