Rebecca Chopp: How to Accept Alzheimer’s Without Losing Yourself

By | February 29th, 2024

Rebecca Chopp returns to Being Patient Live talks to discuss her new book 'Still Me: Accepting Alzheimer’s Without Losing Yourself.' "Alzheimer's is scary," she says. "But you can still find ways to be you after the diagnosis."

Before her diagnosis of mild cognitive impairment and early-stage Alzheimer’s in 2019, Rebecca Chopp was a widely published author, editor, and academic, serving as the 18th and first female chancellor of the University of Denver. She has also served as president of Swarthmore College and Colgate University, as Provost at Emory University, and as Dean of Divinity at Yale University.

Today, she’s still writing — but at the heart of her work is to defy the stigma of Alzheimer’s disease by living with joy — and to help others do the same. Now retired, she enjoys painting classical portraits and abstracts, hiking in the Colorado mountains with her dog Buhdy, and spending time with friends and family.

She co-founded the advocacy group Voices of Alzheimer’s and serves as a board member of the Alzheimer’s Association’s national organization and its Colorado Chapter. Focusing on her new skills as a painter, and on her passion for advocacy, she says she approaches living with Alzheimer’s disease from “a state of awe, and happiness, and joy.” And now, she’s bringing her experience in learning and living with joy through Alzheimer’s to a bookstore near you with her new book, Still Me: Accepting Alzheimer’s Without Losing Yourself (MFF Publishing, February 2024).

“I wrote the book so that people who get diagnosed will not have to spend a year flailing around and looking hither and thither for resources,” she said. “I wanted at least one place to go to get the initial ‘How to move through this diagnosis, how to live well.'” 

In conversation with Being Patient founder Deborah Kan, Chopp discusses her writing process, how she lives well with Alzheimer’s, and her hopes for people who read the book.  Read or watch the entire conversation below.

Being Patient: Since your diagnosis, it feels like your world is just getting bigger. Tell me why you decided to write this book.

Rebecca Chopp: I think my world is larger and more colorful than it ever was. When I first got diagnosed, now almost five years ago, there was no go-to handy source. My doctor didn’t say, “Here’s how to live well with Alzheimer’s.” She did give me some wonderful advice on diet and exercise, but I was in despair and desperation. 

I finally had a couple of friends reach out to me with this and that, and I did a lot of research. I wrote the book so that people who get diagnosed will not have to spend a year flailing around and looking hither and thither for resources. That’s the first reason— I wanted, at least, one place to go to get the initial how to move through this diagnosis, how to live well. 

I also wanted to inspire people to do it because it is depressing when you get the diagnosis. I mean, I was in total despair, but you can’t stay there. If you stay there, you’re gonna get worse. We know that depression and anxiety will make the symptoms come along even sooner, and who wants to do that? 

I wanted to inspire people to step forward to find a story to live well. Third, I wanted to educate everyone I know about the importance of early diagnosis and the importance of removing the stigma that we have that Alzheimer’s leads to instant loss of independence. 

Chopp’s book, “Still Me: Accepting Alzheimer’s Without Losing Yourself,” was published in February 2024.

Being Patient: For people who don’t know, when did you first get a diagnosis?

Chopp: It was March 7th, 2019, when I received the official Alzheimer’s diagnosis.

Being Patient: When you were diagnosed with mild cognitive impairment and early-onset Alzheimer’s disease, you were the Chancellor of the University of Denver. You were leading a very big academic institution with a lot of demands, and a lot of socialization was required. What was it like getting that diagnosis?

Chopp: It was incredibly scary. The testing had gone on for five months, I think. I knew that something could be wrong, and Alzheimer’s had been mentioned; my mother and both my grandmothers had Alzheimer’s. That made me even more scared because it was some years ago, and they weren’t diagnosed until the very later stages. 

I was scared. I was having the time of my life as Chancellor. I didn’t want to step down, but once I got that diagnosis, I wanted to spend more time with my family. I didn’t want to make any mistake looking at this institution. I wanted some time left because I didn’t know how soon those terrible symptoms might appear.

Being Patient: Tell us about where you were at, hearing the A-word, Alzheimer’s.

Chopp: My husband and I were petrified. We were shocked. We were scared. We had heard the word used already in the last five months, but I didn’t really know much about Alzheimer’s. I had the same stigma about it that so many do. 

I thought you got diagnosed, and within a year or two, you couldn’t button your shirt, and you lost your independence. We’d worked all of our lives. We hadn’t even really spent time together. So, I was devastated. I was shocked. We were scared about our future. So, the ground opened, and I went into Hades. That’s how I felt.

Being Patient: I imagine what follows is a big depression. Tell us about how you got yourself out of that funk of that initial shock of diagnosis into, “Wait a second, this isn’t bad. I can live my life a different way.”

Chopp: You’re absolutely right. Everybody I talked to who had gone through that diagnostic experience at the same time I did five years ago got very depressed. It took me months, quite frankly. I had to [do] research about Alzheimer’s. I was very fortunate in that I was [at a] university, and the people in KIHA, the Nobel Institute for Healthy Aging at Denver, started to reach out to me.

“So, the ground opened, and I went into Hades. That’s how I felt.”

They brought me this notebook about “What is Alzheimer’s,” [and] they talked to me about what I could do. One neurologist told me I might live for 15 years. Gradually, because I didn’t have anything else to fill my time, I started doing research. 

After, I don’t know, five or six months, I realized, based on all the research, that if I could cooperate with my health, if I could follow my doctor’s orders, so to speak, I might have the chance to live very well for many years. I wanted to spend time with my family. 

After a couple more months, I decided I wanted to step forward and become an advocate. I wanted to do all I could for research, for treatment, and also to help others get diagnosed, but also not have to spend months and months and months wallowing around like I did.

Being Patient: You were diagnosed in 2019, so it’s been five years now, since your diagnosis. Because of the stigma around Alzheimer’s, people have an image of the old person who is diminishing and declining. I’m sure you get this all the time where people say, “You don’t really seem like you have Alzheimer’s.” Talk to me about that. Does that annoy you when people say you don’t seem like you have Alzheimer’s?

Chopp: I see it as an opportunity because it’s an invitation to educate them. Because stigmas, this horrible word that we carry around, these terrible ideas— but there’s a softer form of stigma. That’s it, they don’t know enough. They think as long as you’re fairly functional, you must not have Alzheimer’s, and I get that a lot. I still get that. It’s been five years. 

“When you’re faced with this life-altering news,
one of the things you can do is decide that everything’s
going to be an opportunity, an invitation, a way to step forward.”

When you’re faced with this life-altering news, one of the things you can do is decide that everything’s going to be an opportunity, an invitation, a way to step forward. So, that’s how I’ve handled it. 

Being Patient: I remember when I was first launching Being Patient, and I was speaking to a neurologist, and they said that Alzheimer’s brains don’t learn anything new. You are living proof that that’s complete BS. You can learn new things, and I continuously use you as an example. For example, you weren’t a painter before you learned how to paint. That is proof that you can still learn. What have you learned from becoming an artist now?

Chopp: It is true doctors used to think you can’t learn anything new, and now, of course, they’re saying, “Oh, the best thing to do is keep learning.” So, thank goodness the science is changing. I had a friend [who] encouraged me to take up art. I mean, I was the kid who couldn’t paint. But I went off with her because she gave me a free weekend at Crested Butte. 

She brought some of my best friends along, and we all had a great weekend together. I kind of enjoyed it; I could lose myself in it, and I liked color— so it was fun. Then I got hooked, and I took some lessons, and I did some portraits. I do abstracts. 

It has meant so much to me. It calms me, and anything we can do to fight anxiety and to stay calm is good. I learned all sorts of things. I used to think, it was another idea I had in my brilliant head, that there was nothing to it— if you had talent, you picked up the brush and you painted.  But that’s just not true at all. 

“What a wonderful world, to see these shapes, and forms, and colors.”

Artists learn their whole lives. I’ve learned all sorts of stuff. One of the most interesting classes I took was a class about how the master painters painted the great portraits, using the glazing technique to add depth. That was fascinating. It has done so much for me. 

It’s also taught me to see the world differently. A walk now out in the forest is different. I’m fascinated with people’s faces. I have to really hold myself back from going up to a stranger in the grocery store and saying, “You have the most interesting mouth, can I take a picture of it?” I mean, it’s bad, but what a wonderful world to see these shapes, and forms, and colors.

Being Patient: We have a question coming in. Are you on lecanemab or another monoclonal antibody drug?

Chopp: I’m not. I’m watching those drugs very carefully. My neurologist worries about the side effects. These drugs are so promising. What’s coming down the road [are] even more promising than what we have now. Right now, lecanemab comes with some side effects. 

Because I am doing fairly well, and I am avid about diet and exercise, creativity, [and] social engagement, my neurologist and I have decided to wait and see for another year. Every time I meet with her, we check it out.

Being Patient: Have you had a PET scan or any of the blood tests to confirm if you have plaque?

Chopp: I do have plaque. I had a PET scan, and I have not yet had the blood test. As your wonderful recent writing focused on the blood tests, they aren’t perfect yet, but I do intend to get one soon. Again, we’re on the edge of the frontier, so I’m keeping very much on top of it. 

I think everyone should keep on top of it. I would say about half of my friends who have Alzheimer’s are trying to get Leqembi or on it. A few of them actually have gotten it, but it is a long waitlist.

Being Patient: In Still Me: Accepting Alzheimer’s Without Losing Yourself, you use a lot of analogies to Greek mythology and history. Tell me about that.

Chopp: For me, so much of this journey has been about reframing, of seeing that I can live with the joy but trying to imagine it. I think the first story, and I tell this in my book, is Persephone. It’s such a beautiful story, because she is the goddess of color, of flowers, and she gets caught by the king of Hades. A deal is made where she can live most of the time, but she still has to go back to Hades. 

“I would say about half of my friends who have
Alzheimer’s are trying to get Leqembi or on it. A
few of them actually have gotten it, but it is a long waitlist.”

For me, those Greek stories, I’m also very into religious stories, too, but those Greek stories often are so “both and.” That was perfect because most of the time, I do well, but sometimes I get very, very anxious. I have a lot of anxiety, and though I look like I’m doing great, I have short-term memory loss; I don’t drive anymore. Most of the time, I live in the spring with color and flowers, but it’s not perfect.

Being Patient: Can you tell me a little bit more about your memory? Do you feel like certain times it’s worse than others, and have you tracked what may be happening?

Chopp: Yes, I think it has. Five years ago, my short-term memory was really good. It’s not so good now. It gets worse when I’m stressed or when I’m tired. I don’t even have to be stressed. I can be around stress when my husband gets stressed. I mean, it’s there. It’s very stress related. 

“Most of the time, I live in the spring, with
color and flowers, but it’s not perfect.”

Even when I’m calm, though, I used to have an almost photographic memory. I’m still very good. Remembering long ago, I can remember pretty much everything. But you know, there’s not a time I don’t walk into the kitchen that I have to say to myself, “What am I here for now?” I know that’s part of aging, but this is way more than aging.

Being Patient: Have you ever had an explanation as to why anxiety might make your memory worse?

Chopp: Well, I don’t know that it’s that direct, but it leads to inflammation in the brain. If you want to put it in layperson’s terms, the moment you get anxious, your brain goes on hyperdrive. It kind of makes common sense that wherever your weak spots are in the brain, they’re going to be weaker. Now, that’s not a high science but the twofold explanation I have read about is one increases your inflammation, and second, your brain gets just as anxious as the rest of your body.

Being Patient: We have a comment. She writes that a few years ago after she was diagnosed, she started writing poems and had never written poems before. She’s written 45 poems about living with a memory impairment. She says, “I can understand how Rebecca’s art is helping her. My writing has become very healing for me.” Would you describe painting as healing?

Chopp: Oh, definitely. I just want to say first of all: applause, applause. I hope I get to see some of your poems published or find a way to get them to me. I’d love to read them. For me, it is about living in awe, and painting calms the anxiety down. 

There is a kind of abiding, awe is a sense of abiding in the universe, connected to something greater now. I can call that God; you might call it something else, but anything that connects us and brings us beyond ourselves is, I think, very spiritually healing. That’s what the arts have always done. 

I remember my grandmother, one of the two who died of Alzheimer’s; she was a master gardener. I look back now, and I realize that she was a different person when she was out there in that garden. She was being healed by the beauty of that. 

Being Patient: ​​My mom, too, was an avid gardener. I’m just taking in so many of the things that you’re saying because my mom is now in a late stage of Alzheimer’s, but she colors for hours.

Chopp: Isn’t it great and amazing? 

Being Patient: She stays perfectly within the lines, and she’s meticulous about it. You can tell it means a lot to her, so there’s something about that connection. That creative connection is so powerful.

Chopp: It’s accessing parts of our brain and soul in a very, very different way. It’s extremely important. I’ll tell you a quick story. A year ago, on Valentine’s Day, I taught a class for people [with] later-stage Alzheimer’s on how to paint a Valentine. They didn’t need instruction. I just kickstarted the experience, and everybody did great. 

“For me, it is about living in awe, and
painting calms the anxiety down.”

Now, some colored, didn’t have lines, and some didn’t; some could draw the lines, and some couldn’t. There was one man who was a professional artist, and he was in a wheelchair, and he wasn’t moving much, and he was nonverbal, and he painted what must have been a heart to him at that point. 

Then, at the end, I asked people to show their hearts, and he got up and sang. He sang this beautiful song, and his wife said, “He has not sung for four years.”

It’s just about doing art that touches, I think, not only our brain but our soul and our body.

Being Patient: Describe to me the Rebecca pre-diagnosis versus Rebecca today, like. Tell me how you’ve changed your lifestyle.

Chopp: I would get up at 4:30, I would do email for half an hour, I did work out for 45 minutes, and then I’d work till nine at night. Presidents and chancellors solve problems, meet donors, deal with students, maybe student disciplinary problems, just engagement, help the faculty— it’s [like] being a CEO of a huge company. I worked, worked, worked. 

If I had any time off, I’d hike. I had friends, but I didn’t get to see them much. I wasn’t conscious of what I ate. I tried to eat healthy, but you know, I didn’t care what I ate, and a couple of glasses of wine at a reception— no big deal. 

Now I rise, I take it easy. I walk my dog for an hour. I come back and [write] my book. I paint, [and] I walk my dog again. I spend time with my friends. I’ve joined book clubs. I spend a lot of time with my son, who drives me and helps me. He’s an artist, so that’s great. We can go do art things together. I do lots of hiking. 

It’s more relaxed, more engaged. I’ve used the word “awe” before. My goal every day is to live in awe.

Being Patient: That’s great. I mean, we all should follow that with or without a diagnosis, right? When you’re describing it, I’m thinking, maybe I should just enjoy life more. It sounds wonderful.

Chopp: Yeah, and I’m not unaware of the problems of the world, and I’m not unworried. I’m very worried. I remember hearing the Dalai Lama speak [one time], talking about how even when you’re addressing injustices and how Alzheimer’s patients are dealt with, sometimes it’s an unjust situation— it’s better to do it from a state of awe, and happiness, and joy. 

“My goal every day is to live in awe.”

That’s something I’ve learned that I probably didn’t realize before. I didn’t realize it, you could build awe in your mind and your psychology, just like you build anything else, that it can be a choice, no matter what you’re facing.

Being Patient: We have another question from our audience asking about the book publishing process. What advice do you give to people who are interested in publishing their writing about Alzheimer’s and cognitive decline?

Chopp: Well, it’s a great question. I have a very good friend who has worked in marketing, and consulting, and she did help me. She helped me connect with the press. That press then found me a fabulous editor. 

What I would say to anybody is find a great editor, and this woman made it a book that’s more readable, laughable, and not quite self-help-y, but there’s a lot of practical guidance in that book. There are lots of presses. You can google self-publishing, and you can also go get an agent.

I did what is called hybrid publishing, which is a form of both where I upfronted some of the costs but not by no means all. That gave me a lot more control over the book, having published traditional books. 

With big presses, you give up all the control. So, I liked the hybrid model, but there are also self-publishing presses. It’s easier for you than you might think. Just start Googling and asking around. In every town, there are small presses that publish. 

Being Patient: After reading your book, what’s that takeaway that you want people to have?

Chopp: I want people to go get diagnosed if they see any giant change in normal behavior. If diagnosed with MCI, dementia, or Alzheimer’s, I want them to use the book as a guide, an inspiration.

“I want the general public to
read it and get educated so we get over
this terrible stigma we’ve been talking about.”

I want the general public to read it and get educated so we get over this terrible stigma we’ve been talking about. I hope it sells lots because all of the money off this book will go to support Alzheimer’s research, treatment, and care.

Being Patient: That’s reason enough to support it. It is a great book to read. To me, reading it makes it feel a lot less scary because we see you’re living life, and you’ve been through it. Thank you for writing it.

Chopp: Thank you, and you know, you just answered the question better than I did. I want people to read the book and not be so scared.

Katy Koop is a writer and theater artist based in Raleigh, NC.

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2 thoughts on “Rebecca Chopp: How to Accept Alzheimer’s Without Losing Yourself

  1. Where can I get tested for Alzheimer’s disease and or dementia related diseases? I am in Colorado and having a lot of trouble with short and long term memory, my grandmother had it and I don’t know where to ge proper testing

    1. Hi Eva, thank you for being here. We suggest scheduling a visit with your primary care doctor to discuss the issues you’ve been facing. From there, they will be able to refer you to a neurologist for further testing if need be. Make sure they take your concerns seriously! And in the meantime, here are a couple resources you might find useful. MCI – Mild cognitive decline – can be caused by all kinds of things. Some of them are reversible with the right diagnosis and treatment: And as you get into any kind of diagnostic process, know how tricky it can be to diagnose these types of conditions, and how important it can be to get a second opinion:

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