Ambiguous Loss: Books for Youth Impacted by Dementia/Alzheimer’s

Caring for a loved one with dementia or Alzheimer’s can be a heartbreaking journey of ambiguous loss, where the person is physically present but may become psychologically absent. This unique form of grief involves mourning the gradual loss of a partner, parent, or family member’s personality, memories, and shared history while they are still living. Children often grieve this loss in silence, struggling with big questions: “Why don’t they remember my name?” “Do they still love me?” “Is it okay to be sad when they’re still here?” This type of grief lacks closure and can be difficult for a young person to put into words. When families are faced with the profound challenge of loving and caring for someone who is both here and not here, often without the societal recognition or support that comes with other types of loss, this can lead to feelings of isolation, guilt, and confusion. The books that follow are offered to help navigate this painful duality, providing validation, coping strategies, and a sense of community for those learning to love the person who remains while grieving the one they remember.

Ages 4-8

• Ice Cream with Grandpa (Ages 3-6) Ice Cream with Grandpa is a loving, tender picture book that gently explores the topics of dementia, aging, and loss. Written from a child’s point of view, it chronicles the changes in their relationship as his grandpa moves to assisted living, then memory care, and eventually hospice. Based on the author’s own experience with her father and son, the engaging story and beautiful illustrations by Elisabete B. P. de Moraes addresses these challenging topics with a kind, age-appropriate approach that will resonate with young readers—while providing tools to help children maintain meaningful relationships with loved ones with the disease. **
• Holding On (Ages 4-8) A young girl in the Philippines uses music to connect with her grandmother as her memory fades in this warm and moving picture book perfect for fans of Pixar’s Coco. There is always singing in Lola’s house. Sammy Davis Jr. in the morning, Dean Martin in the afternoon, and all throughout the evening, old Tagalog love songs from Nora Aunor, Basil Valdez, and more. Lola always says: “If you want to hold on, you gotta sing your songs.” Her granddaughter tucks these sounds and Lola’s wisdom deep within her heart. And when Lola starts slipping into silence and stillness, she helps Lola hold on, piece by piece, with the joy and music that Lola taught her. **
• Grandma, It’s Me (Ages 4-8) Riley loves spending time with her grandparents, but after visiting them one day, she notices Grandma doesn’t recognize her. Mommy explains that Grandma may have dementia, so her memory isn’t as good as it used to be. Riley tries her best to help Grandma remember and writes about their time together in her diary. This uplifting and touching story encourages young readers to support and care for the elderly with love, patience and understanding. Written as a series of diary entries, Grandma, It’s Me! also encourages journaling as a way to process emotions and feelings in order to become resilient to face life’s many challenges. **
• Coffee, Rabbit, Snowdrop, Lost (Ages 6-10) Stump loves being with his grandparents. His days with them are filled with flowers, jigsaw puzzles, crossword puzzles, and so much love! But one day, Stump’s grandfather starts to be forgetful, losing his words, which the illustrations how as falling away from him. Stump tries his best to keep his grandfather’s lost words safe, by collecting them in a special box. But Grandpa seems to forget more and more every day, and before long, Stump and Grandma realize that they must find new ways to connect with Grandpa, to maintain their bond of love and show him that he’s not alone. **

Ages 9-12

• Secret Life of Lincoln Jones (Ages 8-12) Lincoln Jones is always working on the latest story he’s got going in his notebook. Those stories are his refuge. A place where the hero always prevails and the bad guy goes to jail. Real life is messy and complicated, so Lincoln sticks to fiction and keeps to himself. Which works fine until a nosy girl at his new school starts prying into his private business. She wants to know what he’s writing, where he disappears to after school, and why he never talks to anybody. The Secret Life of Lincoln Jones is a terrifically funny and poignant story about a boy finding the courage to get to know the real characters all around him—and to let them know him. **
• Graduation of Jake Moon (Ages 8-12) Jake Moon used to love the time he spent with his grandfather, Skelly, but that was before Skelly got Alzheimer’s disease. All of a sudden, it’s as if Skelly is the kid, and Jake has to be the grown-up. Much of Skelly’s care becomes Jake’s responsibility, and that doesn’t leave much time for a life of his own. Then, one day Jake rebels, and the unthinkable happens. Has Jake discovered too late how much his grandfather still means to him? Barbara Park, one of today’s most popular and versatile authors, has created a funny, honest, and unforgettable portrait of a boy struggling to understand this debilitating disease and graduate to a more sympathetic and accepting relationship with his beloved grandfather. **
• Forever this Summer (Ages 8-12) Georgie has no idea what to expect when she, Mama, and Peaches are plopped down in the middle of small town USA–aka Bogalusa, Louisiana–where Mama grew up and Great Aunt Vie who was just diagnosed with Alzheimer’s needs constant care. Georgie wants to help out at the once famous family diner that served celebrities like the Jackson 5 and the Supremes, but everyone is too busy to show her the ropes and Mama is treating her like a baby, not letting her leave her sight. When she finally gets permission to leave on her own, Georgie makes friends with Markie–a foster kid who’d been under Aunt Elvie’s care–who has a limb difference and a huge attitude. As Georgie and Markie’s histories begin to entwine, Georgie becomes more desperate to find the truth. But words spoken cannot be taken back and once Georgie knows the truth, she may even find a way to right past wrongs and help Aunt Vie and Markie out after all. **
• Hour of the Bees (Ages 10-14) While her friends are spending their summers having pool parties and sleepovers, twelve-year-old Carolina — Carol — is spending hers in the New Mexico desert, helping her parents move her grandfather into a home for people with dementia. At first, Carol avoids prickly Grandpa Serge. But as the summer wears on, Carol finds herself drawn to him, fascinated by the crazy stories he tells her about a healing tree, a green-glass lake, and the bees that will bring back the rain and end a hundred years of drought. As the line between magic and reality starts to blur, Carol must decide for herself what is possible — and what it means to be true to her roots. **

Ages 13-18

• Appetite for Miracles (Ages 13-18) Danna Mendoza Villarreal’s grandfather is slowly losing himself as his memories fade, and Danna’s not sure her plan to help him remember through the foods he once reviewed will be enough to bring him back. Especially when her own love of food makes her complicated relationship with her mother even more difficult. Raúl Santos has been lost ever since his mother was wrongly incarcerated two years ago. Playing guitar for the elderly has been his only escape, to help them remember and him forget. But when his mom unexpectedly comes back into his life, what is he supposed to do when she isn’t the same person who left? When Danna and Raúl meet, sparks fly immediately and they embark on a mission to heal her grandfather … and themselves. Because healing is something best done together—even if it doesn’t always look the way we want it to. **
• Being Toffee (Ages 13-18) Allison has run away from home and with nowhere to live finds herself hiding out in the shed of what she thinks is an abandoned house. But the house isn’t empty. An elderly woman named Marla, with dementia, lives there – and she mistakes Allison for an old friend from her past named Toffee. Allison is used to hiding who she really is, and trying to be what other people want her to be. And so, Toffee is who she becomes. After all, it means she has a place to stay. There are worse places she could be. **
• No Sad Songs (YA) Following a family tragedy, 18-year-old Gabe LoScuda suddenly finds himself thrust into the role of caregiver for his ailing grandfather. Between the shopping trips and the doctor visits with Grandpa, Gabe and his friend John try to salvage their senior year and make the varsity baseball team. It doesn’t take long for Gabe to realize that going to school and looking after a grandfather with Alzheimer’s is more work than he imagined. And when long-lost Uncle Nick appears on the scene, Gabe soon finds that living with Nick and Grandpa is like babysitting two grown men. Aside from John, the only person who truly understands Gabe is Sofia, a punk-rocking rebel he meets at the veteran’s hospital. When these three unlikely friends are faced with a serious dilemma, will they do what it takes to save Grandpa? If there’s a chance of preserving the final shreds of Grandpa’s dignity, Gabe may have to make the most gut-wrenching decision of his life–and there’s no way out.
• Dementia Diaries (YA) The Dementia Diaries is a book for young people about Dementia. The Dementia Diaries is the result of the Prime Minister’s challenge on dementia. A challenge to change people’s understanding of dementia. To raise awareness across the UK. This book follows four young people dealing with dementia in their grandparents, we follow their diaries as they hear of the diagnosis, all the way through to the end. The book looks at dementia from the perspective of a young person, and as such is full of hope and fun and deep understanding. Adapted from interviews with young carers across Kent, the Dementia Diaries’ end goal, is to raise awareness of dementia among young people in a way that’s fun, shareable and life-affirming.

If you are interested in more resources on ambiguous loss, head over to our Ambiguous Loss Resource Hub.

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