Caring for the Caregivers

Keith Amparado first noticed major changes in his mother’s personality when the two of them were planning his father’s funeral. He says her forceful responses to minor disagreements were out of character for his “extremely dignified” mother, who had once been an actress with the American Negro Theater and had gone on to a long career with Consumers Union.

At one point in their discussions with the funeral director, when Amparado interjected with something he wanted, she said: “Well, you can just pay for the entire funeral yourself.” But when he gave the funeral director his credit card, she grabbed it back and said: “This is my husband, and I will take care of the arrangements.”

She would start an argument, but then “in another minute, the whole thing would be gone,” Amparado says, which he describes as one of the “hallmarks” of Alzheimer’s—a progressive, still-mysterious disease of the brain that affects memory, thinking and behavior. “Most people will initiate an argument, and at best it trails off, but it just doesn’t stop and go away,” Amparado says.  

An assistant director in New York University’s information technology division, Amparado says his faculty staff-assistance program referred him to the Alzheimer’s Association, and he took every available course and workshop and participated in support groups. “If they had it, I took it,” he says. Amparado was his mother’s caregiver for 15 years until she died in 2011. Now he is a caregiver support group leader at the association and he also runs a support group he started at NYU.

“Memory loss is what people are the most familiar with, but it’s not just about memory,” says Lou-Ellen Barkan, the president and CEO of the New York City chapter of the Alzheimer’s Association, which is celebrating its 30th anniversary this year. When her father started calling every woman “honey,” and the men “buddy,” it wasn’t immediately obvious that he had lost the ability to recall names, she says. But then she says “he also did something very scary”: He started writing checks to fraudulent charities, “which is very common,” she says, because people with Alzheimer’s also lose their ability to reason and their judgment is flawed.   

DonnaMarie Arrigo of Brooklyn says she knew something was wrong when her mother started repeating herself: “Is it raining? I think it’s raining out.” The first group she attended was on understanding dementia and its different stages—the commonalities and the differences—and “quite frankly, it scared the hell out of me,” she says. Alzheimer’s is “very hard to accept, but you learn to accept it,” she says.

Alzheimer’s started to develop more of a public profile in 1994 when former President Ronald Reagan went public with his diagnosis. A few prescription drugs have been developed that can sometimes help people level out for a period of time, but there is still no cure. It is primarily a disease that strikes people over the age of 65, but the Alzheimer’s Association estimates that up to 5 percent of the more than 5 million Americans with Alzheimer’s have the early-onset version of the disease, which affects people in their 40s and 50s.

On its website, the association runs a service called TrialMatch, which lets the caregivers for Alzheimer’s patients search a database that includes 225 clinical studies at nearly 700 sites around the country. With the baby boomers reaching the age bracket for Alzheimer’s, Barkan says, “the good news” is that the race is on to find a cure. But given the difficulty of working with elderly people with dementia, research is also “expensive and hard,” she says. “In the 11 years I’ve been here, I’ve seen 20 drugs go down the tubes,” she says, though there are now “three drugs of interest.”  

In the absence of a cure, most of the chapter’s efforts are focused on providing support and services to the people who care for the estimated quarter-million people with Alzheimer’s in New York City. Barkan says that when she took the helm, the organization’s budget was under $2 million; it is now $9 million this year, while its staff has grown to 60 people.

“Our support services start with our 24-hour help line,” Barkan says, noting that help is available in 180 languages through a translation service. That line is currently staffed by 12 social workers and three other people, and Barkan says she expects to add four to six more social workers because of growing demand. The line gets about 12,000 calls a year, but the volume of calls is growing by about 10 percent a month, she says.   

One of the things that Barkan says surprised her was that when she started there was “almost nothing” in the way of support for early-stage Alzheimer’s patients who were “cognitively damaged in some way, but still high functioning.” So she created programs where people in that stage of the disease “could talk to a group of people like themselves.”

Barkan says the organization’s support groups are led by volunteers who are “trained and supervised by us.” Since caregivers often can’t leave their relatives alone for very long, the chapter, which is based in Manhattan, is increasing its network of in-borough support groups in Queens, Brooklyn and Staten Island, as well as its “culturally sensitive” outreach programs for the Latino, African-American, Chinese, Russian, LGBT and Orthodox Jewish communities. “Each one of the subsets has very specific feelings about Alzheimer’s,” Barkan says.

The chapter can also help caregivers find home health care aids who have completed the association’s training in caring for people with dementia. And since wandering is a big problem with Alzheimer’s patients, the chapter has about 22,000 people registered with MedicAlert bracelets in New York City. She wants to expand that program since the odds of finding someone within 24 to 48 hours is “almost 100 percent” if they have the bracelet, she says. Barkan says the chapter also trains police officers on safe return of people with dementia at the precinct level.

Of course, lobbying for greater funding for Alzheimer’s research is a big part of the effort. Currently, the National Institutes of Health provides $585 million a year for Alzheimer’s research—far less than for cancer, HIV, cardiovascular disease or diabetes—and Barkan says her organization is trying to get that increased to $2 billion. If a cure is not found before 2050, the cost to Medicare and Medicaid of taking care of a growing population of seniors with Alzheimer’s is projected to rise from $214 billion to $1.2 trillion, Barkan says—enough “to destroy the health care system.”

“This is the most costly disease in the U.S.,” Barkan says, especially since Alzheimer’s patients can live as long as 20 years after the diagnosis—though “over time, the body just shuts down,” she points out. That makes Alzheimer’s the only cause of death in the top 10 that can’t be prevented or cured, she said.

 

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For more information, visit www.alz.org/nyc or call the Alzheimer's Association 24/7 hotline at 1.800.272.3900.

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