More than 5 million Americans are currently living with Alzheimer's disease, and the National Institute on Aging estimates that that number is going to triple by 2050 — in part due to aging baby boomers.
The cost of coping with the disease — currently estimated at $215 billion — is projected to rise to half a trillion dollars by 2050. That amount will likely tax our overburdened health care system, the economy and the families of those affected.
I'm not just trying to keep my parents alive. I'm trying to have a good life with them and live my life at the same time.
Amy Goyer realized her 84-year-old father Robert's health was deteriorating one night while watching a movie with him.
"He asked me the name of the movie like 20 times within a half-hour, and I thought, 'This is not normal for him,' " Goyer tells NPR's Jacki Lyden.
It wasn't normal; it was Alzheimer's. As her father's condition worsened, Goyer made the decision to return home to Phoenix to take care of him.
"As time progressed, he was having trouble managing the finances; the paperwork was overwhelming," she says. "He would get incredibly stressed out ... [and] little things about his memory kept getting worse and worse."
Goyer is no stranger to caregiving; she's worked at AARP for 19 years giving advice as a home and family expert. When she first began taking care of her dad, she decided to start a blog, which then turned into a web video series.
In the series, Goyer offers advice to caregivers like herself, who are struggling to take care of their loved ones.
"It's very challenging, and there are times I get very exhausted," she says. "And I just feel like the biggest enemy of caregivers is sleep deprivation because you just do not have the energy to deal with the emotional aspects of it and ... just doing, doing, doing."
Because her mother is at home, too, recovering from a stroke, Goyer often has to help both parents get up in the morning and go to the bathroom, do all of their personal grooming and put on their pajamas at night. She also must make sure they have all their medications throughout the day.
Goyer does have some help, but caring for someone with Alzheimer's can be staggering. She says one of the most difficult aspects of the disease is what's been described as "the long goodbye."
"Over time, it's like he's being robbed of who he is," she says. "And my dad is probably the most optimistic person you'd ever know, and he still has that, which is wonderful for us. But there are times when he gets very cranky because he doesn't know what's going on."
Given her family history of Alzheimer's — her grandmother had it as well — Goyer says she fears getting the disease herself.
"I think about it all the time, but it's hard when I'm focusing on caring for my parents to think about that for myself," she says. "All I can do is anything that will prevent the onset of the disease. But I sure would like to have a lot more tools in my toolkit to fight it."
A Search For Answers
Alzheimer's is a disease that can last a really long time and cost a lot of money — so much money, in fact, that the U.S. government is paying attention with new legislation.
In 2011, Obama signed the National Alzheimer's Project Act into law. Currently, about $500 million per year goes to Alzheimer's research, and the new law includes an additional $100 million toward treatment, research, medicine and diagnostic tools.
Dr. Dorene Rentz, a neuropsychologist and co-director of Harvard Medical School's Center for Alzheimer's Research and Treatment, has been studying Alzheimer's patients for three decades. In 2005, the breakthrough was the discovery of something called amyloid plaque in the brains of patients with Alzheimer's. Not all people with the plaque go on to develop the disease, however.
"Unfortunately, we've come to discover that many older individuals who are still normal have these changes of amyloid plaque," Rentz tells Lyden.
She says doctors believe an abundance of what's called fibular amyloid may trigger Alzheimer's, but that's not always the case. Some people can walk around with a "head full of fibular amyloid," she says, and live normal lives.
In patients already diagnosed with Alzheimer's, even if amyloid plaque is removed, the neurons may be too damaged for memory loss to be reversed. If diagnosed earlier, there might be some hope.
Rentz and a colleague at Harvard are launching a nationwide clinical trial this fall to see what happens in the brains of people who have amyloid plaque, but not Alzheimer's. The object of the study is to see if doctors can remove the amyloid and prevent them from getting symptoms of Alzheimer's.
Living With Alzheimer's
In 40 years, there will be 13.8 million people in the U.S. alone living with Alzheimer's.
Over her 30-year career working with the disease, Rentz says, people she had diagnosed with Alzheimer's were devastated because there wasn't much that could be done. Things have changed, however, as technology and awareness has improved.
"People are more educated and many people are coming earlier to get tested because they are experiencing memory loss," she says.
Even when a patient's clinical profile indicates early signs of a neurodegenerative disease like Alzheimer's, Rentz says, she gives them hope because there are things that can be done.
"Because they're not yet fully devastated in this disease, we can actually give them some FDA-approved medications that are good in keeping people stable for a while," she says.
Rentz says she also encourages a healthy diet and intellectual stimulation, what's called "optimal aging." She says this helps people with early signs of Alzheimer's — who often tend to withdraw — to stay engaged and active.
Goyer won't let her parents withdraw. She's providing a happy, nurturing environment, getting her parents as engaged as possible and having fun.
"I'm not just trying to keep my parents alive; I'm trying to have a good life with them and live my life at the same time," she says. "There's still a lot of fun and a lot of surprises and just a lot of love. My parents are just very sweet individuals and I'm very lucky in that way."
There might not be a cure for Alzheimer's, but that doesn't mean there isn't hope.
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