By Dwain Hebda | Photography by Jamison Mosley
Any way you look at it, Alzheimer’s disease is the plague of our times with a new diagnosis every 65 seconds in the U.S. And, if experts are correct, that will only grow as America continues to age in record numbers.
In fact, the sad statistics are that someone you love is destined to be diagnosed with the disease. And because of the disease’s particularly long and subtle gestation – up to 20 years before the onset of symptoms — that someone could very well be you.
“The Alzheimer’s Association just came out with their new statistics where they’re saying 60,000 Arkansans are diagnosed with Alzheimer’s,” says Elise Siegler, executive director of Alzheimer’s Arkansas, a nonprofit providing support and resources to Arkansas families dealing with the disease.
“Well, we would guess at least three times that many,” she adds.
Given these numbers, Alzheimer’s disease doesn’t suffer from lack of name recognition; even if it does bear its share of stigma, there are not too many adults who have never heard of it. Neurons in the brain deteriorate, affecting various functions, including memory loss and personality changes early on. In the latter stages, the brain “forgets” how to perform basic and advanced body functions such as walking and swallowing.
The cruel manner in which Alzheimer’s envelops its victims is precisely why many people struggle in silence prior to being diagnosed.
“What normally happens is the person with the dementia — and Alzheimer’s is the largest form of dementia that we’ve got —is hiding it as long as they can,” Siegler says. “They know something’s wrong. They don’t know what it is and it scares them. It frustrates them, but they’ll hide it as long as they can. They’ll compensate for it. They’ll stop going out or they’ll stop socializing with friends or they’ll stop their Bible study. They’ll start isolating themselves because their behaviors are not normal.”
Running an organization that deals with a disease for which there is currently no definitive cause and no known cure drives organizations like Alzheimer’s Arkansas and the unaffiliated Alzheimer’s Association Arkansas chapter to provide as much support for family members as possible. About 83 percent of the 5.7 million Alzheimer’s patients nationwide are tended by family, friends or other unpaid caregivers.
“Once the family picks up on it, it’s pretty much full-blown dementia,” Siegler says. “The family is not prepared; they go in to see the physician and oftentimes it’s months before they can see a neurologist because their calendars are so backed up. By then, you’ve got Mom collecting spoons all over the place or Dad driving off to work — but he doesn’t work anymore.”
Families also absorb roughly 70 percent of the roughly $340,000 lifetime cost of their loved one’s Alzheimer’s-related care, costs that are generally inflated due to delayed diagnosis.
“[Nationally], we’ve been able to quantify that with a number, $7.9 trillion, that it costs for not having early detection,” says Susan Neyman, executive director of the Arkansas chapter of the Alzheimer’s Association.
“Think about this scenario: Someone’s older and they have other medical challenges but there’s no Alzheimer’s diagnosis,” she adds. “They have a crisis, and when their behavior kind of gets out of whack, they’re going to be hospitalized because no one knows what to do with that. All kinds of additional tests happen.
“If people knew up front that this is Alzheimer’s, and this is not that they didn’t take their insulin or whatever else, think about all the expense and the time that can be saved.”
Early detection also gives the patient some say in how they wish for their life to play out at a stage when they can still make those decisions rationally, notes Tina Hunter, director of programs for the Alzheimer’s Association Arkansas chapter.
“With early detection, you know what you’re working with,” she says. “Planning for the future, the person with Alzheimer’s can talk about their wishes. Where do they want to live? In the early stages, it’s the better time to move than after we’re in crisis.”
Seemingly everything about Alzheimer’s disease is a one-step-forward, two-steps-back scenario. Even when a proper diagnosis is made, for instance, there’s often a knowledge gap in the medical community insofar as directing families to available resources.
“I would say the number one frustration we have is that folks are diagnosed with dementia and sent back into their homes in their communities with no knowledge of what the disease is and no resources,” Siegler says. “Physicians don’t have the knowledge of what resources are out there. They don’t share that information with the families because they don’t know and it’s a shame they don’t know.
“We try to inundate them with information because not only our organization, but many other organizations have financial resources, support systems, educational systems in place that, for a caregiver, relieve that fear of the unknown,” she adds.
Both the Alzheimer’s Association and Alzheimer’s Arkansas support multiple programs for families, including caregiver hotlines, reference libraries, workshops at locations across the state and, in some cases, direct financial assistance for Alzheimer’s-related expenses. These programs are paid for by the groups’ various fundraising events, such as Alzheimer’s Arkansas’ Champions Gala held in March and the Alzheimer’s Association’s RivALZ Blondes vs. Brunettes women’s flag football game in May.
Both groups also support multiple community walks serving the dual purpose of fundraising and awareness. Statewide, Alzheimer’s Arkansas hosts five Walks of Love and the Alzheimer’s Association puts on six Walk to End Alzheimer’s events. Another signature event of the Alzheimer’s Association is called The Longest Day.
“The Longest Day is still fairly new,” says Carly Dethlefs, event manager for the Alzheimer’s Association. “It’s a DIY fundraising opportunity for individuals to get involved, based around the longest day of the year, the summer solstice. It’s a fun thing because you can literally do anything you want; if you are a baker you can sell baked goods on The Longest Day or around The Longest Day. If you are a bridge player, you can get with your bridge friends and play bridge or you can create an entirely original event around what you like to do.”
The hundreds of participants in these events and the thousands upon thousands of dollars raised show how pervasive Alzheimer’s is. Yet both associations say the current numbers pale in comparison with what’s about to come and both groups are working overtime to be prepared.
“We’re working toward reaching and serving more families so that people don’t have to do this alone,” says Neyman. “We know our reach is not great across 75 counties. We know that the southern part of the state is, number one, under-served and number two, there are some cultural barriers and number three, the African-American population has twice as big a likelihood of getting the disease. You put all three of those things together and we really need to provide some help there.”
This story was originally published in the May 2018 issue of AY Magazine.