Young Adult Novelist Explains How Fiction Helps Teens Understand Dementia

Krysten Lindsay Hager, Competing with the Star

By Krysten Lindsay Hager

After my dad passed in the summer of 2015, I was sitting on my couch watching TV when I got a message from some readers asking what happened next for my characters Nick and Hadley from my book, Next Door to a Star. I was in my grief bubble, and this email was a welcome bright spot letting me know someone cared enough about the characters to want to know their future. I thought writing about what happened next might be a way to get my mind off grieving. It was when I got to sixty pages that I realized I might have a book.

I was working on it when I took a break to go to the grocery store where, once again, I spotted tabloid covers about Robin Williams. The headlines always said things like, “Terrifying Disease,” “Agony,” “Torture,” “Sad Last Days,” “Rapid Decline,” or the quote from his wife describing Lewy Body Dementia’s effects as a “swift persecution.” Every time I stood in line and saw these headlines, I would begin to physically react. At best, I would get anxiety; at worst, I feared I was going to pass out in line. These weren’t just headlines to me—these were the last few years of my life watching my own father go through this and not understanding the diagnosis until Robin Williams’ autopsy came out. Even then, all we got was the understanding of why Dad went under anesthesia and woke up with a different life—one where he could no longer walk and no one knew why. One where he was confused and for some reason sliding out of bed. Overnight his life had changed. Parkinson’s took over his body and these headlines served to remind me just how bad things had been.

So on that day, I walked out to the parking lot and it hit me—if we didn’t understand the initial diagnosis, how many other people were dealing with it—or worse— and seeing the same headlines I did, which filled me with fear. I thought maybe I could use my experience to bring awareness to a disease that people know little to nothing about.

Krystewnm Lindsay Hager, Competing with the StarI wanted to show how emotional bonds grow even stronger when dealing with a loved one with Lewy Body. I decided to have Nick, the love interest in Competing with the Star, be the one whose grandfather had it. This way he could share his experiences with the main character, Hadley, and it also served to show the kind of person he was spending his weekends at the nursing home instead of at home playing video games and hanging out with friends like most teens his age.

When I told people that my sequel was going to be more of a romance than the first book, I said, “But even though the first book was set mostly on the beach and in the beach town, this one has them at the nursing home a lot.” Their mouths all dropped open and I heard comments like, “You set a young adult romance in a nursing home? Are you crazy?” I said, “Trust me, it works. It’ll make you root for this couple more.” Then I gave them advanced reader copies and they said, “It works.” “It’s not a superficial teen romance this way.” “It’s not depressing with the setting—it makes you like the characters more.”

Then the book went out into the world and on the night of its release I thought, “I will never know the reason Dad had to go through this, but maybe someone will be helped by reading about it.”

Since the book’s release, I’ve heard from people who have a grandparent or parent going through Lewy Body, and the Lewy Body Society sent me a message saying, “Well done,” which made me tear up. I had also written a subplot in another book for preteens and teens called Landry in Like, where Landry’s best friend is scared to go to the nursing home to visit a grandparent with dementia. I’ve received feedback and support on that from parents trying to get their kids to understand the importance of going to see family in nursing homes. I’ve had so many parents say, “Wow, my teen is going through exactly that and she thinks she’s all alone.”

I’ve learned through writing about Lewy Body Dementia that so many other people are also going through it and feeling like they are the only ones. All I wanted during my time with Dad was to not feel so scared and alone. I didn’t get that, but I hope I can provide just a bit of comfort for someone else who is in those shoes.


About the Author

Krysten Lindsay HagerKrysten Lindsay Hager writes about friendship, self-esteem, fitting in, frenemies, crushes, fame, first loves, and values. She is the author of True Colors, Best Friends…Forever?, Next Door to a Star, Landry in Like, and Competing with the Star (The Star Series: Book 2). Her debut novel, True Colors, won the Readers Favorite award for best preteen book. Her new book, Dating the It Guy, will be released in March. Krysten’s work has been featured in USA Today, The Flint Journal, The Grand Haven Tribune, The Bellbrook Times and on Living Dayton.



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Competing with the Star

Landry in Like

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