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.”
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 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.