LEAF: Amanda Sullivan’s Book to Help Young Readers Understand FTD

Talking about dementia with family members can be difficult, especially when it comes to explaining dementia to children. Story books can be incredibly helpful in this endeavor — but when pediatric psychotherapist Amanda Sullivan started looking around for a book that explained frontotemporal dementia, specifically, there wasn’t much to find.

To help explain her mother’s FTD to her own children, Sullivan, also a licensed independent mental health practitioner and clinical social worker, wrote Leaf, a children’s book that commemorates the life of her mom.  Sullivan lives in Lincoln, Nebraska, where she co-owns a private practice of six therapists. Up until her mom’s death in 2022, she also coordinated and managed her medical care. 

“I wanted to normalize it for kids,” Sullivan told Being Patient. “I wanted them to feel like their experiences and their emotions were happening to other people, and they weren’t alone.”

Watch or read the full live talk to learn more about Sullivan’s caregiving journey — and her book, Leaf — below.

Being Patient: Tell us a little bit about the first signs of FTD with your mom and when she was first diagnosed.

Amanda Sullivan: My mom was actually still teaching high school as an art teacher when her symptoms first presented. It was about early 2017. She was really beginning to struggle communicating, finding the correct words, and expressing herself verbally. She was also just acting a little off. 

Fast forward to [the] spring of 2017 and she was retiring at this point. She had been seen by a few different doctors. They had ruled out a stroke, TIA, or CVA— we didn’t have any diagnosis, though. We didn’t have any answers, and that summer, her symptoms really started to increase in severity. 

She couldn’t follow a conversation; she wouldn’t remember the names of objects, she was substituting words incorrectly. We really saw her begin to isolate herself. She withdrew when we would have family gatherings, which was very unusual.

Being Patient: How old was she at the time?

Sullivan: She was in her mid-60s. I think she just turned 65, the bad February of 2017. At this point, she was even struggling to comprehend written language and spelling rudimentary words and had difficulty with just daily tasks like loading the dishwasher or making a credit card transaction. 

“She couldn’t follow a conversation;
she wouldn’t remember the names of objects,
she was substituting words incorrectly. We
really saw her begin to isolate herself.” 

Like I said, she was just acting a little bit odd. We had a follow-up appointment scheduled with the neurologist that October of 2017. At this point, that was the first medical appointment that I actually attended with her. My dad was there as well. 

Prior to that appointment, I had typed up notes, just [a] brief social history: a list of her presenting symptoms and what we as a family had been seeing over the last few months. I remember requesting a further evaluation, whether that would be like a mini mental state examination, mini cog test, or clinical dementia rating, just to rule out or confirm what I suspected at that point was frontotemporal dementia, specifically presenting as primary progressive aphasia.

Being Patient: There’s been a lot of publicity around that because of Bruce Willis.

Sullivan: Exactly. That’s what he was diagnosed with. The neurologist did confirm that diagnosis [and] he ruled out Alzheimer’s by doing a spinal tap.

Being Patient: I don’t mean to interrupt you, but I think this is a really important point. You said you suspected it was FTD and aphasia. How did you know enough to suspect that?

Sullivan: Her symptoms match that disorder specifically. I also have some experience working in a hospital as a medical social worker, so I was a little bit familiar with various forms of dementia. That was something that I feared was the case, but I was hopeful it wasn’t. I really wanted to be wrong [about] her diagnosis. After that appointment, I kind of transitioned into the role of overseeing her medical care.

Being Patient: Did you have FTD in your family? Because I know there are a percentage of cases where it is genetic.

Sullivan: Yes, that’s correct. We do not have it in our family, so I will be honest: it really caught us off guard. Her symptoms, watching her personality change so much; she was very vibrant [and] great in social interactions. She was very bubbly and cheerful, extremely articulate, great memory, and to see her change so drastically—it was very terrifying and heartbreaking. We were not expecting it. We don’t have Alzheimer’s or any form of dementia that runs in our family.

“She was very bubbly and cheerful,
extremely articulate, great memory, and
to see her change so drastically—it was
very terrifying and heartbreaking.” 

Being Patient: With FTD, a lot of people talk about behavioral changes because the disease impacts the frontal cortex of your brain first. The other thing I’ve heard from people like yourself who have lived through it is that the rate of onset is much more rapid than in other dementias like Alzheimer’s. Is this what you were seeing with your mom? Tell me a little bit about what that was like.

Sullivan: She was still teaching when her symptoms first started to present, and they progressed very rapidly. By that October, by that fall, she was beginning to be somebody that we didn’t really recognize. Within two years of her post-diagnosis, she was essentially mute; she could not talk verbally. I would say within a year or so after that, she couldn’t even recognize loved ones.

Being Patient: Was it that she was losing her speech? I’ve also heard of cases where people don’t act like who they really are. Like exhibiting anger, when they’re not really angry and things like that. Did you see signs like that type of change in her personality?

Sullivan: Definitely. It was both, to be honest, especially in the beginning. We saw that communication piece where she really struggled to express herself verbally. I remember very early on she would struggle to understand when listening to conversations. I remember her saying, “I don’t know, I don’t understand.” 

And just her personality. She was withdrawing so much, isolating herself, and acting a little off. You just see that personality change, and it happened so rapidly. I felt like every time I saw her, there was a new symptom. There was something that was missing.

“I felt like every time I saw her,
there was a new symptom. There was
something that was missing.” 

Being Patient: My mom is in a later stage of Alzheimer’s right now and losing words, and she feels that frustration of not being able to communicate. With FTD, because it’s the front of your brain, how cognizant do you think she was about these changes that were occurring?

Sullivan: When it first started that first year, maybe even the first two years, she was very aware. She would get extremely frustrated. I took her to see a speech pathologist for a little while to help her. She would say, “Stupid, stupid, I am stupid. I used to be smart,” a lot because she was just so frustrated that she knew what she wanted to say, and she couldn’t express it. She was an extremely intelligent, articulate person. It was heartbreaking to see her struggle; someone who should be able to communicate.

Being Patient: You’ve written a book called Leaf that is aimed at children. Tell me a little bit about why you wrote this book and at what stage. Was it when your mom was declining or after?

Sullivan: I wrote this book while my mom was actually still alive. I began to work on it. The idea came pretty early, just because I’ve really struggled to find any children’s books for my own kids that [were] about this specific type of dementia. Everything I found was more related [to] Alzheimer’s, which did not match the experience they were living. That’s kind of how I came up with the idea. I didn’t actually publish it until after she had died.

“The idea came pretty early,
just because I’ve really struggled to find
any children’s books for my own kids that
[were] about this specific type of dementia.” 

Being Patient: How old were your kids at the time when your mom was going through this?

Sullivan: My daughter had just turned four, and my son was six when she started to present with her symptoms.

Being Patient: They were really young kids. How did you communicate to them what was going on? The relationship with grandparents is such a loving one in so many cases, so I can imagine that would be really hard. Did she withdraw from the kids, or what was the situation?

Sullivan: She did at times. I remember there was this one time [when] my kids were visiting, and they were all in the swimming pool together. My mom just kind of separated herself from the kids at one point, and that was very unusual. 

There [were] times that she would still interact with them, and she would hold them and snuggle with them, but she definitely had moments where she was struggling. I’ve tried my best to be honest with the kids and tell them what was happening in an age appropriate language and really just allow them to be able to express their feelings about it.

“I’ve tried my best to be honest
with the kids and tell them what was
happening in an age appropriate language and
really just allow them to be able to express
their feelings about it.” 

Being Patient: Tell me about the story of Leaf and how you approached the book.

Sullivan: “Leaf” is my mom’s nickname that my dad gave her because she was a very petite little woman. She was only 4’11″, and my dad used to say, “You’re as light as a leaf.” So, that was her nickname. That’s what the book is named after. 

When I first came up with this idea of writing a book about FTD for children, I was going to do it in a more fictional context, a story that basically illustrated and educated others about how FTD can present and affect families. Then I thought, you know, why not make it about my mom specifically? I think she’s a person a lot of people could relate to. 

As the story evolved, it became more about the person than the illness to kind of help humanize it. I wanted to normalize it for kids. I wanted them to feel like their experiences and their emotions were happening to other people and they weren’t alone.

It’s basically her story, growing up as a child all the way through. She was a very, very passionate teacher, very involved with her students. I basically just told the story of her, and then at the very end, you really start seeing dementia take over. Because she did have plans to volunteer and to do art lessons, and all of a sudden, when she was getting ready to have those plans [that’s] when we see that illness take over, and that’s kind of towards the end of the book.

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