Nearly 7 million Americans are currently living with Alzheimer’s disease, a number that’s projected to skyrocket to 13 million by 2050. Unfortunately, that means it’s increasingly likely that you or someone you know will eventually face this painful diagnosis. It’s a condition that’s often darkly dramatized in movies and TV or spoken about in hushed tones, but the best way to understand what the disease is really like is to hear from someone who’s living it.

Rebecca Chopp was diagnosed in 2019 at age 68. The news was crushing. She was still enjoying her four-decade career in education that included being provost at Emory, dean at Yale, president of Colgate University and Swarthmore College, and chancellor at the University of Denver — and all of her professional fulfillment came to a sudden halt as she pivoted to focus on her health. But there’s good news, too: Because she caught it early, her prognosis is much better than she expected. Chopp’s doing so well, in fact, that she’s written a book called Still Me: Accepting Alzheimer’s Without Losing Yourself.

In the video above, watch as Chopp shares the deeply personal tale of how it felt to become an Alzheimer’s patient and her take on what lies ahead — and below, read a few highlights from the conversation, including the benefits of early diagnosis, how family members can handle the disease with respect, and why this illness may not look exactly the way you imagine.

The diagnosis doesn’t mean a patient will experience immediate mental decline

“When I first got diagnosed, it was devastating,” Chopp says. “We knew I had to retire. The doctor said, ‘Get your affairs in order.’ It really was being dragged into the coldest depth you could imagine. I felt like my life was over.”

She wasn’t comforted by what she heard from her neurologist, who told her, “In three years, you won’t be buttoning your shirt.” Unwilling to accept that concept so easily, Chopp found another neurologist — a “loving, patient” doctor who opened her eyes to the upside of her circumstances. Chopp had been diagnosed early, meaning she could continue living the life she knew for years to come, with a combination of medical treatment, diet, and exercise.

“I carried the stigma — based on the fact that people used to be diagnosed only in the later stages — that if you get the label of Alzheimer’s, you can’t remember, you lose your independence, you lose yourself,” Chopp says. “But that’s just not true now that we’re able to diagnose people in earlier stages. We’re going to see many, many, many more people with this diagnosis, and we’ll be able to treat them with medicine and with lifestyle changes. So, yes, those bad symptoms of not remembering our loved ones will occur, but it may be 10 to 15 years from now.”

How to talk to someone with Alzheimer’s (while preserving their dignity)

“When you get diagnosed with Alzheimer’s, many people don’t know how to treat you,” Chopp explains. “When I was first diagnosed, I had this friend who kept talking loudly to me. I finally had to explain to her that I wasn’t going deaf, I was just losing brain connections.”

Another example: “I had other people — and still this occasionally happens — who talk only to my husband. It’s kind of infuriating.”

So how should you interact with someone who’s been diagnosed?

“I’ve been in a number of groups of people who have Alzheimer’s, and we all say the same thing: Treat me with dignity. Engage me. I’m still me,” Chopp shares. “I know that, maybe 15 years from now, I will begin to kind of lose myself. But until then — until the very end stages — I’m still me.”

What might those interactions look like? Chopp suggests activities like going for a walk, taking a trip to a botanical garden, or seeing a movie — all of which can be especially impactful for a patient who can no longer drive themselves to enjoy these things.

Telling you about their diagnosis will be a huge emotional challenge

“One of the hardest things with my diagnosis was needing to tell my adult son,” Chopp recalls. “He’s my only child, and we are very, very close. And, you know, as his mother, I’m his protector. I’m his caretaker.”

Telling a family member about a diagnosis is always hard, but Chopp says it felt especially complicated given that her son, Nate, was 42 when it happened. “There’s very little written about how a parent tells an adult child this kind of tragic news, and it’s a huge shift in the relationship,” she says.

Chopp invited her son and his wife to her home, where she shared the news around the kitchen table. The conversation was tough (“He cried and I cried,” she remembers), but now Nate has become an essential lifeline in this difficult journey.

“He and his wife were so incredible. They said, ‘We’re gonna be there for you,’ and they have been,” Chopp says. “He’s now my driver. They moved close by, and he said about the move, ‘I just want to spend more time with you, Mom.’ He’s wonderfully supportive. But it’s a very hard process to tell the ones you love that you have this diagnosis.”

The time to enjoy a connection with your loved one is now

“Until now, I always delayed gratification,” Chopp says. “I put things off to the future. I didn’t live in the present. Now, every day is a gift — and I used to think Oh, that sounds so hokey when people say it. But it’s not at all. It’s a real gift.”

One of Chopp’s goals is to live a life dedicated to “that feeling of being connected to something greater.” She says she’s “intentionally strengthened the muscles of joy,” and she doesn’t take for granted a single moment with the people who are important to her.

“Now I really prioritize the awareness of awe; the gratitude I feel; the nature around me; my relationships with my husband, my son, my sister; walking my dog,” Chopp tells us. “It changes time and space, and you are more fully present in the now, at least for me.”