From former President Ronald Reagan and entertainer Glen Campbell to the
fictional Alice Howland portrayed by actress Julianne Moore in the film, Still
Alice, Alzheimer’s disease steals a lifetime of memories and the ability to care
for oneself. There is no cure.
Don’t go through it alone and don’t wait to get help. Those are the twin neon-flashing-light
messages that Claire Day ’93 comes back to again and again when she talks about Alzheimer’s.
More than 5 million Americans are living with this deadly disease, which mostly affects those 65 and older. As the Baby Boomer generation ages, those numbers are projected to skyrocket. There is no cure, but there is help. And the sooner you look for help, the better, says Day, the senior vice president of the Alzheimer’s Association, Delaware Valley Chapter.
For one thing, there are more treatment options that can delay the onset of symptoms for those in the early stages of Alzheimer’s, a neurodegenerative disease that makes up 60 to 80 percent of dementia cases.
Early detection also benefits the estimated 15.5 million caregivers. “Families tend to say things like, ‘That’s just Aunt Jenny.’ We rationalize,” Day says. “But early diagnosis allows for better planning, such as conversations about future care and completing a living will.”
Reaching out early can help people avoid another common problem. “This can be a very isolating
disease,” Day says. “Caregivers need to know that there’s a whole community of people out there, that there are ways for people to feel supported.
“Alzheimer’s is a disease that will progress to 24-hour care,” she adds. “It’s not something people should take on without a care team. It’s OK to need help.”
Day became interested in Alzheimer’s soon after graduating from Bloomsburg. Her first social work job was at a continuing care retirement community in Central Pennsylvania that bucked the status quo of the early ’90s by creating a special unit for those with dementia.
She also began volunteering for the Alzheimer’s Association, which trained her to run a monthly support group. “The more I got involved as a volunteer, the more I wanted to advocate for change in the dementia field,” Day says. “Now I get to do that every day.”
Her work with the association also helped her understand one basic fact: Alzheimer’s is not normal aging. “We shouldn’t lose the ability to tell the difference between a car key and a comb, or the ability to use common words,” Day says.
Day recalls staffing the national Alzheimer’s helpline years ago when a woman called, worried that she might be in the early stages of the disease. Her concern was justified.
“She called because she opened the freezer and found a tape dispenser,” Day says. “She spent 10 minutes trying to blame it on someone else, but she lived alone and finally realized, ‘There’s no one who could have done this but me.’ ”
Memory loss and misplacing things are two of the first signs that there could be a problem. Other early warning signs include difficulty completing familiar tasks, confusion with time or place, and changes in mood or personality.
But Day is quick to note that forgetting where you left the car keys shouldn’t automatically send you scrambling for the helpline number. Instead, be alert to changes in an individual’s normal behavior.
“If my mother forgets a name, that’s no surprise to me. She’s never been good with names,” Day explains. “But if she can’t do a crossword puzzle, then I would get worried because she can finish The New York Times crossword.”
As the disease progresses, the person needs more and more help, such as reminders to do basic tasks and step-by-step instructions for how to make a meal. Behavior changes also are common, including a potential for wandering and increased aggression that Day says is often caused by an unmet need. “The challenge is figuring out what that need is,” she says.
The statistics on Alzheimer’s ring alarm bells on multiple levels.
One in nine seniors over 65 — or roughly 11 percent — have Alzheimer’s. Almost two-thirds of Americans with Alzheimer’s are women, mainly for a simple reason. “The biggest risk factor is age,” Day says, “and women live longer.”
But even younger people get Alzheimer’s: an estimated 200,000 Americans under 65 are living with the disease.
The strain on the health care system and the nation’s economy is enormous. According to the New England Journal of Medicine, Alzheimer’s is already the nation’s costliest disease. One report estimates that, given the current trajectory, it will cost $20.8 trillion over the next 36 years to pay for care, with Medicare bearing the brunt of that cost.
It’s also the sixth leading cause of death in the U.S., killing more people than breast and prostate cancer combined. Average life expectancy after diagnosis is about eight to 12 years.
“What typically ends the life of someone with Alzheimer’s is what the disease does to other systems in the body,” Day explains. For example, as the disease progresses, a person may lose the ability to control swallowing. This can lead to fluid build-up in the lungs, causing pneumonia and, often, death.
So where is the hope? Unfortunately, recent drug trials for new treatments are falling short of their initial promise. However, there is some optimism surrounding research on early intervention and treatment for people with no symptoms.
The work of the Alzheimer’s Association is another bright spot.
“Part of what we do is help people understand why this needs to be such a priority,” Day says. The association helps raise awareness and research funds, and provides a wide range of resources and support tools for caregivers. Along with its year-round work, the group organizes the Walk to End Alzheimer’s, which takes place in more than 600 locations — including Bloomsburg — and participates in National Alzheimer’s Disease Awareness Month, enacted by former President Ronald Reagan in 1983.
In terms of awareness of and attention to the disease, things are moving in the right direction. The National Alzheimer’s Plan unveiled in 2012, for example, is a federal bipartisan effort that aims to prevent and effectively treat Alzheimer’s disease by 2025.
“While we don’t have the estimated $2 billion a year we need for research to get treatment by 2025,” Day says, “we are seeing that researchers and the government are paying more
attention. They are making changes we hadn’t seen in previous decades.”
Of course, everyone is waiting for that big breakthrough that will lead to a cure and an answer to the central mystery surrounding the disease.
“We know what’s happening in the brain. We don’t know why,” Day says. “I still maintain that I won’t be surprised by anything. I hope I live to see the day when I can say, ‘Huh. So that’s what it was.’ ” •
Willie Colón is a freelance writer based in Philadelphia.