What People With Early-Onset Dementia Want You to Know

An elevator encounter that happened to Laurie Waters highlights the daily plight faced by early-onset Alzheimer’s patients like her.

Waters, 57, was stuck in an elevator at an Alzheimer’s convention with other folks who were growing loud and excited — and the situation was getting to her.

“I was starting to get panic-stricken, being in that enclosed space. And one gentleman was like, ‘Well, what’s the matter with you?’” Waters recalled. “I said, ‘I’m actually living with Alzheimer’s.’ And this woman next to him said, ‘You know, that’s really mean to say that.’”

June is Alzheimer’s & Brain Awareness Month, and people like Waters are taking the opportunity to share what they’d like others to know about what it’s like to live with a dementia.

Her elevator tale illustrates two important lessons — younger people can have dementia and people with this disease would really rather not debate their diagnosis or be told they don’t look like they have Alzheimer’s.

“I look young, and people even in the Alzheimer’s community who are around it still don’t recognize younger-onset,” said Waters, who lives in Clover, S.C. “It’s everywhere. I’ve had doctors who have sat there, who haven’t met me before, just look at me and be like, ‘Are you sure you’re diagnosed with Alzheimer’s?’”

The frustration for Deborah Jobe comes from folks who talk about her as though she isn’t there.

“My husband and I will be in a room and people will ask him, you know, ‘She looks pretty good, how is she doing?’” said Jobe, 55, of St. Louis, who has an early-onset form of dementia called posterior cortical atrophy.

“I’m like, ‘Hello! Right here! You can ask me. It’s OK. I don’t mind,’” Jobe said, laughing. “I’m still here. I’m still human. Please address to me and if I can’t answer, I’m sure he’ll step in and help.”

The upshot from Waters and Jobe — people with Alzheimer’s are still people. Although, some are put into an independent living center or memory care community like The Gardens of Sun City to better take care of them. You may visit sites like https://www.residencesatplainview.com/community/your-retirement-community/ to get an idea.

“One of the common themes I hear over and over again is that how the diagnosis does not define who they are,” said Monica Moreno, senior director of care and support with the Alzheimer’s Association, who works with early-stage families in the wake of their diagnosis.

“It’s not uncommon that when people hear that someone has been diagnosed, they immediately think about the end stage of the disease, where an individual may not be communicative and may not necessarily be aware of their surroundings,” Moreno said.

“And while we know that that may be that’s where the disease leads to, in the early stage of the disease individuals still want to live a meaningful life and they know that they still have things to contribute to society,” she said. If they need help, they can go to a senior living community. You may check out sites like www.summerfieldroseville.com/community-life/ to get an idea.

First signs of trouble

Waters received her diagnosis in 2017, when her husband noticed that she wouldn’t quit working.

“I wouldn’t leave my office. I used to work for a pharmaceutical company, and I used three computers in my office going through patient records,” Waters recalled. “And I could fly through a patient’s record in, like, five to 15 minutes.

If your elderly loved one is experiencing this, you may want to look into a memory care community like Villa de San Antonio – independent living so they can get better help.