What Dementia Feels Like
Four individuals discuss the early stages, including some of the first symptoms they experienced
Grappling with a dementia diagnosis can bring on an array of emotions, shifting among fear, anxiety, dread and more. Approximately 5.8 million Americans are living with dementia — a cluster of symptoms that can rob a person of their ability to think, remember and reason — and everyone’s experience is different.
The years following a diagnosis are often painfully brief: Individuals with Alzheimer’s disease, the most common form of dementia, live an average of four to eight years after being diagnosed, though people can live with the disease for up to two decades as it progresses from mild to more severe stages (there are five total). And the day-to-day can feel complex.
“I can drift in and out of stage 1, stage 2, stage 1, or not at all,” says Bart Brammer, 72, who was diagnosed with Alzheimer’s at age 70. “My memory can be focused, and I can tell you my history teacher’s name. And then later on that day, I can’t tell you who I’m running into in the parking lot that I’ve known for years.”
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After grieving and processing his diagnosis, Brammer realized that his days weren’t getting progressively worse. While some mornings are a slog, others feel full of energy and possibility.
People with dementia are finding the courage to face their future, doing the hard work of making their own decisions — and trying to enjoy life, too. Here are four of their stories.
“The words would not come out right”
Deb Jobe, 56, Lake Saint Louis, Missouri
Deb Jobe first knew something was wrong when she began finding her work as a customer service manager more difficult than usual.
In her early 50s, she was uncharacteristically blanking during presentations. “The words would not come out right — the word would be in my brain, but the wrong word would come out,” Jobe recalls. “And it was such a challenge for me to learn new things. I had to ask questions over and over again.”
At first, Jobe thought stress was to blame. But then her husband, Jon, also started noticing that she seemed different. She was repeating conversations and having difficulty remembering things. Sometimes she wouldn’t remember a conversation at all.
“He finally said, ‘You know what, Deb, something’s wrong with you. Something’s not right,’ ” she remembers. That’s when they went to the doctor. Her primary care physician “took it seriously,” Jobe says, and didn’t brush off her symptoms as signs of menopause. (Some women report issues with brain function, or “brain fog,” when going through menopause.)
What are the signs of dementia?
Signs and symptoms can vary, but common ones include:
- Memory loss, poor judgment and confusion
- Difficulty speaking, understanding and expressing thoughts
- Difficulty with reading and writing
- Wandering and getting lost in a familiar neighborhood
- Trouble handling money responsibly and paying bills
- Repeating questions
- Using unusual words to refer to familiar objects
- Taking longer to complete normal daily tasks
- Losing interest in normal daily activities or events
- Acting impulsively
- Not caring about other people’s feelings
- Losing balance or experiencing problems with movement
Source: National Institute on Aging
She visited a local neurology clinic to undergo testing, including a PET (positron emission tomography) scan, a type of imaging test. “It did not come back good at all,” she says. Neither did the other tests, which “hit me very hard,” she remembers.
At the age of 53, Jobe was diagnosed with posterior cortical atrophy (PCA), a rare form of Alzheimer’s disease that affects the part of the brain responsible for spatial perception, complex visual processing, spelling and calculation.
“I just clearly remember sitting there at the doctor’s office ... and hearing that finality of the dementia diagnosis, looking at the status on the paper. I felt like my entire world crumbled,” she says. “It was the very first time I broke down, really, in tears, gut-wrenching tears. It just felt like it’s real. This is real. It’s happening.”
The first six months were the most difficult. Jobe wasn’t able to keep her job, and breaking the news to friends wasn’t easy. Some stayed by her side. Others didn’t.
“It’s hard when you watch some people fade from your life,” says Jobe, who now serves as a member of the Alzheimer’s Association’s Early-Stage Advisory Group. “But I think that cognitive-based therapy and the Alzheimer’s Association made a difference for me, because I had people to lean on and to talk to.”
Though there have been challenges — she no longer drives, and one time she added an extra zero on a check — the disease has brought something to her life that was never there before.
“All of a sudden, I have this artistic ability,” she says. It started slowly, with adult coloring books. Now she sketches and works on more complex pieces. “I look at [my art] and I’m like, ‘This came out of me’ ... So how fascinating is that? I think that’s extremely positive.”
Her advice to others: Early intervention is key. “Go to the doctor, get the testing done,” Jobe says. “If you don’t catch it earlier and you don’t take those first steps, you may be giving up years of having a better quality of life and extending [your] independence.”
“I was feeling some occasional confusion”
The Rev. Clare Sulgit, 51, St. Marys, West Virginia
At first, doctors weren’t sure whether Clare Sulgit, a United Methodist Church pastor and mother of three adult stepchildren, had early-onset dementia, a diagnosis that, according to the Alzheimer’s Association, affects approximately 200,000 Americans under the age of 65.
After her initial evaluation, the testing came back inconclusive. It wasn’t until she had a PET scan and a lumbar puncture (or spinal tap) that she was diagnosed with mild cognitive impairment due to early-onset Alzheimer’s disease at the age of 51 this past January.
“It was pretty devastating,” Sulgit recalls.
It all started in the summer of 2021, when she realized that she was having trouble enunciating words. It was tough “finding the words I was looking for,” she says. “I was also feeling some occasional confusion, and that was new for me.”
So she made an appointment with her doctor. Though Sulgit’s father died with dementia, causing her to feel “hyper-aware of such changes,” she almost canceled her appointment multiple times. She thought it was all probably due to the pandemic; it was stress that was causing her symptoms.
The news came as a shock. “Frankly, I was surprised. I was expecting there to be nothing wrong, or a diagnosis of frontotemporal dementia,” Sulgit says, which tends to occur at a younger age than Alzheimer’s. It’s also the type of dementia her father had.
Sulgit has tried to stay positive. “Life is still very good. I remain hopeful that while a cure may not be found in my lifetime, there’s lots to live for and meaningful experiences to be had,” she says. She enjoys reading, gardening and volunteering, and she’s thankful she’s able to continue her work as a pastor. “My faith plays a large role in offering comfort and hope,” she says.
She has also applied to participate in a clinical trial at West Virginia University’s Rockefeller Neuroscience Institute. “It gives me access to medical treatments I wouldn’t be able to receive otherwise, and I hope it will slow the progress of the disease,” she says. And even if it doesn’t help her, she adds, “I know it will give researchers information that will help others.”
“I know what the letter K looks like … but I can’t remember how to draw it”
Daniel Miller, 59, Charleston, West Virginia
For Dan Miller, the first thing to go was his typing. The 59-year-old retired procurement analyst and grandfather of two also had difficulty remembering names.
“I also started having trouble putting on my clothes, backwards,” the West Virginia resident remembers. He wondered if it was late-onset dyslexia. “And I was told there is no such thing.”
At first, Miller’s primary care physician dismissed his symptoms as “age-appropriate, maybe arthritis,” he says. But that all changed when he brought up his handwriting.
“Finally, I told the doctor, ‘You don’t understand. I know what the letter K looks like. I know it when I see it. But I can’t remember how to draw it,’ ”he says.
That’s when his doctor sent him to a specialist who ordered an MRI (magnetic resonance imaging test). Miller says it took over two years, “maybe as [many] as three years,” just to get a diagnosis. Like Jobe’s, it was PCA.
“My wife has to drive, because the day I got diagnosed they also told me to stop driving,” he says. “That’s a major part of independence that I’ve kind of lost now.”
Since his retirement, Miller has focused on his recovery. He believes it’s important to advocate for yourself to get the best care possible, including access to potential treatments and clinical trials. And to anyone who may be putting off that doctor’s visit, he says, “Be a little assertive, and make sure you explain everything with as much detail as you can.”
“I showed up at the wrong airport”
Bart Brammer, 72, Old Hickory, Tennessee
“I was starting to confuse my dates, my hotels, my rental cars, my airplanes,” says Bart Brammer, 72, a former corporate trainer who had a 30-year career in automotive manufacturing.
His travel-heavy work schedule had him visiting three locations in a typical week. “I showed up at the wrong airport. I showed up at the wrong training site. I showed up a day early,” he remembers.
But he didn’t go to the doctor. He thought his issues were caused by stress, his busy schedule or working too hard.
It wasn’t until he had a stroke at age 70 that things changed. While he was in recovery, managing a stutter and memory loss, his doctor ordered a PET scan. The imaging test revealed that he had early-stage Alzheimer’s, and dementia was setting in.
Though planning for this “quick absence of mind” has been difficult, Brammer says, what’s even more challenging is not being able to plan for the future. If someone asks what he’s doing on July 4th — not this year, but next — he doesn’t have an answer. “I can’t think that far ahead because of the fear I may not be around. And there’s no way of knowing,” he says.
Brammer kept his diagnosis a secret for six months, mostly because he was so worried about the stigma. “Some people with Alzheimer’s are living in absolute fear,” he says. “They’ve just pretty much crawled inside their shell and said, ‘OK, that’s all there is. There’s no more. This is how it’s gonna be.’ ”
Eventually, though, he was able to share what he was going through. Now he can see the positive side: He feels less urgency in his life, and with that, less stress.
“I appreciate the time that I have a lot more than I did,” Brammer says.
In the past, he would ask himself, What’s the next thing? What am I doing next? Where am I going next? What’s the next truck? What’s the next boat? “That’s all disappeared,” he says. “I’m actually living for today. And I’m in the moment.”
He’s slowly learned that “attitude is everything.” If you work hard to have the right mindset — and it can be exhausting at times — you can hold on to your independence a bit longer. “I’m tickled to death to wake up in the morning, and I thank God for every day,” he says.