Claude Schneider of Gainesville lost his wife of 62 years, Mary, to Alzheimer’s disease in August.
But their journey began about nine years ago, when he began noticing changes in her.
“She just started losing her memory. She would get into the wrong car or she would get frustrated with the checking account,” Schneider said in an interview at the couple’s home before Mary’s death.
“That’s the most frustrating time for (Alzheimer’s patients),” he said. “They realize they’re losing it, and they can’t do a darn thing about it. Whereas, now, she’s lost it, but it doesn’t bother her anymore.”
Alzheimer’s disease is one of the most feared diagnoses on the planet. It isn’t just incurable. It can be slow and terrible in its progression, as sufferers lose all awareness of people and surroundings.
And it is painful for caregivers, often family, who watch in heartbreak as disease victimizes a loved one.
“Everyone dies of something,” said Whitney Wharton, an Emory University and Alzheimer's Association researcher. “Alzheimer’s is just particularly nasty, both for the recipient and caregiver.”
The good news is both awareness and research around Alzheimer’s and related dementias is on the rise.
“We had the biggest Alzheimer’s Association meeting this year than we’ve ever had,” Wharton said of the 2018 conference in Chicago. “There were 5,700 scientists, students, investigators, clinicians from all over the world.”
The attendees “brought their expertise in everything, from genetics to neuroscience and patient care, and everyone is working very feverishly to find a treatment and how best to prevent the disease.”
In Georgia, a bill passed this year reauthorizes the Georgia Alzheimer’s and Related Dementias Advisory Council, which advises the Department of Human Services and the legislature on planning for care for people who have been afflicted.
Most of the public concern and research may center on Alzheimer’s, but it is just one of several dementia-related conditions.
What is dementia
According to the Alzheimer’s Association, dementia is a general term for memory loss and other cognitive abilities serious enough to interfere with daily life. And Alzheimer's is the most common type of dementia.
Alzheimer’s, dementia facts
An estimated 140,000 people in Georgia are living with Alzheimer’s
More than 5 million Americans are living with Alzheimer’s
1 in 10 people age 65 and over have Alzheimer’s
More than 15 million Americans provide unpaid care for people with dementia
In 2017, dementia cost the United States an estimated $259 billion
Source: Alzheimer’s Association
Memories lost, moments cherished
A series exploring dementia, how it affects our community and the resources available to those affected. Read other stories in the series.
Vascular dementia, which occurs after a stroke, is the second most common dementia type. But there are many other conditions that can cause symptoms of dementia, including some that are reversible, such as thyroid problems and vitamin deficiencies.
Dementia is caused by damage to brain cells, interfering with the ability of brain cells to communicate with each other. When brain cells cannot communicate normally, thinking, behavior and feelings can be affected, according to the Alzheimer’s Association.
In Alzheimer's disease, high levels of certain proteins inside and outside brain cells make it hard for brain cells to stay healthy and to communicate with each other.
The brain region known as the hippocampus is the center of learning and memory in the brain, and the brain cells in this region are often the first to be damaged. That's why memory loss is often one of the earliest symptoms of Alzheimer's.
Memory loss doesn’t occur naturally as people age, perhaps bucking a public perception of the disease, but the disease usually strikes when people are much older.
“Your risk increases greatly after you reach age 65,” according to the Mayo Clinic’s website. “The rate of dementia doubles every decade after age 60.”
People with rare genetic changes linked to early-onset Alzheimer's begin experiencing symptoms as early as their 30s, according to the Mayo Clinic.
Alzheimer’s disease tends to run in families, but “part of it, we think, is a yet unknown physiology,” said Wharton, who holds a doctorate and is a cognitive neuroscientist specializing in Alzheimer’s and related disorders.
“The hereditary component affects a smaller proportion of the people who have Alzheimer’s,” said Dr. Daniel Cobb, founder of The Neuro Center in Gainesville. “For most people, it’s not hereditary. It’s sporadic.
“For the vast majority of Alzheimer’s, we don’t really know the cause. They’re looking at everything. Is it environmental? Is it your overall health? Is it exposure to traumas and head injuries that might kill off brain cells when you’re younger?”
Causes may be hard to pin down, but how the disease affects patients and their families is very real.
How dementia affects families
During the interview with Claude Schneider, Mary, 87, reclined in a nearby chair, dozing mostly and speaking only occasionally.
“What’s the matter with Louis?” she randomly asked at one point.
“Nothing is wrong with Louis, honey,” Claude said of the couple’s oldest son.
Mary’s illness forced many changes in her husband’s life.
“I get her up in the middle of the night to go to the bathroom, I help her get dressed in the morning and showered, fix breakfast, do the laundry and just take care of the house,” said Claude, also 87.
The emotional toll can’t be measured.
“It is hard, because you see something beautiful …,” he said, his voice trailing off as he choked up.
Derin White has been through dementia with both her parents. Her mother had Alzheimer’s and her father had Parkinson’s disease affected by dementia.
She left her career in information technology for a couple of years “to help figure out solutions for them.” It was that experience that led her to work in senior care.
White now works at the Gardens of Gainesville senior living center off Thompson Bridge Road.
“For me personally, if I was on this journey and learning all these things you don’t know until you (need to), then I needed to share that with others,” she said. “It led to a calling for me, if you will.”
One memory she has particularly of her mother, who lived with the disease for 10 years or so, was the two of them sitting in her living room one afternoon.
Her mother, a homemaker who loved to decorate, suddenly asked, “Who’s house is this?”
“It’s your house, Mom,” White said.
“No, I would never decorate my house like this,” her mother said.
White chuckled at the memory. “You have to find the humor along the way,” she said.
Sheila Humberstone, a statewide Alzheimer’s advocate who lives in Brookhaven and has a cabin in Flowery Branch, recalled her mom’s diagnosis. It came around Humberstone’s birthday.
“I would never forget your birthday,” she recalled her mom saying. “I burst into tears … because I knew it was only a matter of time when she would not only not remember my birthday but she wouldn’t remember me.”
What’s being done
Humberstone became instrumental in pushing what would be known as the Georgia Memory Net, a network of Memory Assessment Centers to improve residents’ access to Alzheimer’s and dementia care throughout the state. The goal was to increase the number of people who receive an early diagnosis.
Flowery Branch resident Rob Polak’s advocacy work in Alzheimer’s and related dementia also has been influenced by personal experience. His grandfather and mother suffered from it, and within the last six months, his oldest sister — at 71 — got the diagnosis.
“Within a month of the diagnosis, her husband died of a stroke/heart attack,” Polak said. “He was going to be her primary caregiver, so that kind of sent the family in turmoil.”
Today, he serves as a district ambassador to the Alzheimer’s Association’s Georgia chapter. His job is to work directly with U.S. Rep. Doug Collins, R-Gainesville, on how Congress can better help address the health crisis.
“This is not a red issue or blue issue,” Polak said. “It affects everybody. It doesn’t pick its victims based on anything.”
Collins knows the issue firsthand, as his mother suffered from early stages of Alzheimer’s before she died earlier this year, and his father-in-law also had the disease.
“I’ve always been in favor of more spending for Alzheimer’s,” he said. “Compared to cancer and other (diseases), we don’t spend proportionately enough. We’re trying to focus on (National Institutes of Health) spending in making sure Alzheimer’s is better represented at a better proportion.”
According to the NIH, $1.85 billion is being spent this year on Alzheimer’s research, compared to $6.6 billion for cancer, $2.3 billion for cardiovascular diseases, $2 billion for digestive diseases and $2.8 billion for “emerging infectious diseases.”
Alzheimer’s funding, however, is estimated to drop to $1.5 billion in 2019.
As elder care coordinator at Kimbrough Law in Gainesville and Athens, Bre Simmons has seen her share of heartbreaking stories of families deciding how to care for a loved one with the disease.
Ideally, she prefers helping families prepare for — rather than respond to — long-term health care issues.
“Denial is a hard beast,” said Simmons, who spent more than three years working as the administrator at a memory care center in Athens. “It’s hard for children to see their parents decline, but at some point, they have to take control and take charge.”
As emotional and difficult as the disease is on patients and their caregivers, “the personalities of these people (with Alzheimer’s and dementias) are still there.
“We have to remember that we have to go into their world,” she said. “They cannot come into ours. So, by going into their world and being with them, you can have a lot of great joy.
“Your mom may not recognize you, but you can still take her on a walk and see her joy when she sees flowers and the trees. Those moments may be different, but you can still find joy there.”
Schneider’s wife was at a stage where she needed constant care. He could get a break to run errands or visit the YMCA by dropping her off at The Guest House, a daytime-only medical care and activity center in Gainesville.
But otherwise, he was Mary’s primary caregiver.
And he didn’t mind at all.
“I’ve enjoyed taking care of her,” Claude said 10 days before her death. “After 62 years (of marriage), granted some of my personal time is gone, but it’s a joy to be able to help her.