Dementia resources for young people

Dementia is a complicated and emotional topic for everyone. Many resources are available for adults but only a few resources are specifically designed for the information needs of young adults, teenagers or children. This post features a selection of resources on dementia for young people.  All titles are available for loan through the Alzheimer’s Australia Vic library and may also be available via your local public library service.

Website: Dementia In My Family by Alzheimer’s Australia Vic

dementiainmyfamilywebsite_smallChildren and teens of all ages impacted by a diagnosis of dementia in their family can now find support and information at our newly launched website, dementiainmyfamily.org.au

Featuring videos, games and quizzes, this site is full of colourful, interactive, age-appropriate content about dementia. Kids and teens can read the shared experiences of others in similar circumstances and learn they are not alone. They will find ideas to make sense of what is happening in their families and how to take care of themselves, as well as information on how to get more help if they need it.

This excellent site offers young people of all ages tailored information on dementia.

Books for readers aged 0 – 6

Book: When My Grammy Forgets, I Remember : A Child’s Perspective on Dementia By Toby Haberkorn, Illustrated by Heather Varkarotas (2015)

when my grammy forgets I rememberWhen My Grammy Forgets, I Remember: A Child’s Perspective on Dementia provides conversational openings and stimulates discussion between parents and children about compassion and this debilitating disease. Alzheimer’s and other types of dementia not only affect the person living with the disease, but the entire family, including the children. This story explores the difficult reality of dementia and the bittersweet changing relationship between a granddaughter and her grandmother. By including children in the family discussion, parents help them become resilient and empower them to provide comfort for the grandparent or loved one with Alzheimer’s.

Book: My Grandpa by Marta Altes (2013)

my grandpaMy grandpa is getting old but that’s how he is, and I love him. This unique look at old age through the eyes of a young bear is big-hearted, poignant, and beautifully observed. Whether they are boldly traveling the world in an armchair or quietly listening to the song of a hidden bird, the mutual adoration of grandfather and grandson is warmly evident.

Book: A day with grandpa by Fiona Rose (2014)

day with grandpaTake your child by the hand and enter grandpa’s enchanted world, where everything is possible for a day. Every page bursts forth with magical images that add extra meaning to the poetic story of a child and his grandad.

Books for readers aged 6 – 10

Book: Weeds in Nana’s Garden : A Heartfelt Story of Love That Helps Explain Alzheimer’s Disease and Other Dementias. By Kathryn Harrison (2016)

weedsA young girl and her Nana hold a special bond that blooms in the surroundings of Nana’s magical garden. Then one day, the girl finds many weeds in the garden. She soon discovers that her beloved Nana has Alzheimer’s Disease; an illness that affects an adult brain with tangles that get in the way of thoughts, kind of like how weeds get in the way of flowers. As time passes, the weeds grow thicker and her Nana declines, but the girl accepts the difficult changes with love, and learns to take-over as the magical garden’s caregiver. Extending from the experience of caring for her mother, artist Kathryn Harrison has created this poignant story with rich illustrations to candidly explore dementia diseases, while demonstrating the power of love. It is a journey that will cultivate understanding and touch your heart. After the story, a Question and Answer section about Alzheimer’s Disease and dementia is included.

YouTube: Kids4Dementia, Alzheimer’s Australia NSW (2015)

Children and grandchildren of people with dementia speak frankly about what it is like having a relative with dementia.

Book: Always my grandpa : a story for children about Alzheimer’s disease by Linda Scacco, illustrated by Nicole Wong (2006)

always my grandpaThis heartwarming tale describes what it is like to be close to a grandparent who has been diagnosed with Alzheimer’s Disease. Daniel and his mom spend every summer with his Grandpa at a cottage by the sea. Daniel loves these summer visits: playing baseball, walking on the beach, watching the sunset, and hearing Grandpa’s stories of his fishing boat. As the summer passes, Grandpa begins to change. Daniel learns that since Grandpa has Alzheimer’s disease, he will have trouble remembering all the things that belong to him—his clothes, his words, his memories—and eventually, his own grandson.

Through gentle narration and easy-to-understand explanations, the book explains Alzheimer’s disease and how it affects children, and families.

A Note to Parents offers guidance for helping children with common emotions and reactions to Alzheimer’s disease.

YouTube: My Grandmum, My Papu, My Grandpa and Me by Alzheimer’s Australia NSW (2014)

My Grandmum, My Papu, My Grandpa and Me is an animated series produced by Alzheimer’s Australia NSW which features three children, Ezekiel, aged six, Bibi, aged nine, and Julia, aged 11, talking about their experiences of their grandparent with dementia, in their own words.

Book: Haven House : A Child’s Perspective of Alzheimer’s Disease by Rebecca Darling (2016)

haven houseGillian loves to spend time with her Nanny. They enjoy precious moments together, from long walks in the park to drawing beautiful pictures with special colored pencils. Gillian also loves to hear Nanny’s stories about their family. Gillian starts to notice changes in Nanny. She begins to lose interest in activities and becomes easily confused. As nanny’s health declines and dementia sets in, Gillian must accept her Nanny’s condition and find new ways to love and connect with her.

This story includes the person with dementia’s transition from family-based care to a specialised residential aged care setting and explains this with sensitivity and respect in an age-appropriate way.

Books for readers aged 10 – 15

Book: The Memory Cage by Ruth Eastman (2011)

memory cageAlex’s grandfather keeps forgetting things, and Alex has overheard his adoptive parents say that they’re going to put granddad in a home. His grandfather begs Alex to save him from that, and it’s a promise Alex is desperate to keep. But Alex once promised his little brother that he would save him, and in the terror of the Bosnian war, he failed. As Alex struggles to protect his grandfather, he uncovers secrets that his family and the village have kept for two generations. Unravelling them will cause grief, but will they save grandfather, and perhaps help Alex come to terms with his own private war?

Book: Sundae Girl by Cathy Cassidy

sundae girlJude’s family are crazy, quirky, bizarre …her mum brings her nothing but trouble and her dad thinks he’s Elvis! All she wants is a hassle-free life – but it’s not easy when she’s chasing a trail of broken promises. To add to the complications, Jude’s grandmother has Alzheimer’s disease and her grandfather is very busy caring for her.  Things go from bad to worse, but could the floppy-haired boy from school be her knight on shining rollerblades …?

Books for readers aged 15+

Book: Hour of the Bees by Lindsay Eagar (2016)

hour of beesWhen Carol and her family move to her grandfather’s deserted ranch in order to transfer him to a care home, Carol struggles to cope with the suffocating heat and the effects of her grandfather’s dementia. Bees seem to be following her around, but the drought means this is impossible. She must be imagining things. Yet when her grandfather chooses her as the subject for his stories – tales of a magical healing tree, a lake, and the grandmother she never knew – Carol sees glimmers of something special in what her parents dismiss as Serge’s madness. As she rethinks her roots and what she thought she knew about her family, Carol comes to the realization that Serge’s past is quickly catching up with her present. A stunning coming-of-age story.

Book: Unbecoming by Jenny Downham (2015)

unbecomingThree women – three secrets – one heart-stopping story. Katie, seventeen, in love with someone whose identity she can’t reveal. Her mother Caroline, uptight, worn out and about to find the past catching up with her. Katie’s grandmother, Mary, back with the family after years of mysterious absence and ‘capable of anything’, despite living with Alzheimer’s disease. As Katie cares for an elderly woman who brings daily chaos to her life, she finds herself drawn to her.

 

You can find more dementia stories and resources for children, tweens and teenagers here, in a previous post on this topic.

Remember: All titles are available for loan through the Alzheimer’s Australia Vic library and may also be available via your local public library service.

 

 

 

Recent fiction with people with dementia

2017 Update

As you may know, it can feel like it’s entirely possible to read about dementia all day, every day and still only cover a fraction of the resources available.  At the Alzheimer’s Australia Vic library we’ve found that many people enjoy learning more about dementia in a fictional setting.  Fortunately, there are some amazing stories which provide both a gripping read and valuable information on how dementia can impact and change both the person with dementia and those around them.

This post covers books released over the last two years – 2014 and 2015. Links to previous posts about fictional accounts of dementia are also included at the conclusion of this post.  We hope that some of these resources are also available through your local library. If not, you can contact us or perhaps put in a request for these via your local library.

spool of blue threadA Spool of Blue Thread by Anne Tyler, 2015

“It was a beautiful, breezy, yellow-and-green afternoon…” This is how Abby Whitshank always begins the story of how she fell in love with Red that day in July 1959. The Whitshanks are one of those families that radiate togetherness: an indefinable, enviable kind of specialness. But they are also like all families, in that the stories they tell themselves reveal only part of the picture. Abby and Red and their four grown children have accumulated not only tender moments, laughter, and celebrations, but also jealousies, disappointments, and carefully guarded secrets. From Red’s father and mother, newly arrived in Baltimore in the 1920s, to Abby and Red’s grandchildren carrying the family legacy boisterously into the twenty-first century, here are four generations of Whitshanks, their lives unfolding in and around the sprawling, lovingly worn Baltimore house that has always been their achor.

Brimming with all the insight, humor, and generosity of spirit that are the hallmarks of Anne Tyler’s work, A Spool of Blue Thread tells a poignant yet unsentimental story in praise of family in all its emotional complexity. It is a novel to cherish.

we are not ourselvesWe are not ourselves by Matthew Thomas, 2014

This novel is light on racy subplots and heavy on the messy, claustrophobic fog of family life. It is by turns wrenching in its portrait of a family battling illness and plodding in its depiction of the sociological realities of mid-century middle-class American life. At its centre is Eileen Tumulty, who grows up in a working-class Irish enclave of Queens, New York. When she meets her husband, Ed, a young neuroscientist, she believes she is finally climbing the ladder into the respectable upper-middle-class. But then in midlife, just as the couple’s son is entering his teens, Ed is diagnosed with young onset Alzheimer’s disease.

Note: this is also available as an audiobook from our library.

memory bookThe memory book  by Rowan Coleman, 2014

The name of your first-born. The face of your lover. Your age. Your address…

What would happen if your memory of these began to fade?

Is it possible to rebuild your life? Raise a family? Fall in love again?

When time is running out, every moment is precious…

When Claire starts to write her Memory Book, she already knows that this scrapbook of mementoes will soon be all her daughters and husband have of her. But how can she hold onto the past when her future is slipping through her fingers…?

A Sunday Times bestseller and Richard & Judy Autumn Book Club pick, The Memory Book is a critically acclaimed, beautiful novel of mothers and daughters, and what we will do for love.

This is a story about younger onset dementia.

Note: this is also available as an audiobook from our library.

arsonistThe Arsonist by Sue Miller, 2014

From the best-selling author of While I Was Gone and The Senator’s Wife, a superb new novel about a family and a community tested when an arsonist begins setting fire to the homes of the summer people in a small New England town.

Troubled by the feeling that she belongs nowhere after working in East Africa for 15 years, Frankie Rowley has come home-home to the small New Hampshire town of Pomeroy and the farmhouse where her family has always summered. On her first night back, a house up the road burns to the ground. Is it an accident, or arson? Over the weeks that follow, as Frankie comes to recognize her father’s slow failing and her mother’s desperation, another house burns, and then another, always the homes of summer people. These frightening events, and the deep social fault lines that open in the town as a result, are observed and reported on by Bud Jacobs, a former political journalist, who has bought the local paper and moved to Pomeroy in an attempt to find a kind of home himself. As this compelling book unfolds, as Bud and Frankie begin an unexpected, passionate affair, arson upends a trusting small community where people have never before bothered to lock their doors; and Frankie and Bud bring wholly different perspectives to the questions of who truly owns the land, who belongs in the town, and how, or even whether, newcomers can make a real home there.

Eliz_Is_MissingElizabeth Is Missing: A Novel by Emma Healey, 2014

In this darkly riveting debut novel—a sophisticated psychological mystery that is also an heartbreakingly honest meditation on memory, identity, and aging—an elderly woman descending into dementia embarks on a desperate quest to find the best friend she believes has disappeared, and her search for the truth will go back decades and have shattering consequences.

Maud, an aging grandmother, is slowly losing her memory—and her grip on everyday life. Yet she refuses to forget her best friend Elizabeth, whom she is convinced is missing and in terrible danger.

But no one will listen to Maud—not her frustrated daughter, Helen, not her caretakers, not the police, and especially not Elizabeth’s mercurial son, Peter. Armed with handwritten notes she leaves for herself and an overwhelming feeling that Elizabeth needs her help, Maud resolves to discover the truth and save her beloved friend.

This singular obsession forms a cornerstone of Maud’s rapidly dissolving present. But the clues she discovers seem only to lead her deeper into her past, to another unsolved disappearance: her sister, Sukey, who vanished shortly after World War II.

As vivid memories of a tragedy that occurred more fifty years ago come flooding back, Maud discovers new momentum in her search for her friend. Could the mystery of Sukey’s disappearance hold the key to finding Elizabeth?

Note: this is also available as an audiobook from our library.

Stars Go BlueStars go blue : a novel by Laura Pritchett, 2014

We first met hardscrabble ranchers Renny and Ben Cross in Laura’s debut collection, and now in Stars Go Blue, they are estranged, elderly spouses living on opposite ends of their sprawling ranch, faced with the particular decline of a fading farm and Ben’s struggle with Alzheimer’s disease. He is just on the cusp of dementia, able to recognize he is sick but unable to do anything about it -the notes he leaves in his pockets and around the house to remind him of himself, his family, and his responsibilities are no longer as helpful as they used to be. Watching his estranged wife forced into care-taking and brought to her breaking point, Ben decides to leave his life with whatever dignity and grace remains.

As Ben makes his decision, a new horrible truth comes to light: Ray, the abusive husband of their late daughter is being released from prison early. This opens old wounds in Ben, his wife, his surviving daughter, and four grandchildren. Branded with a need for justice, Ben must act before his mind leaves him, and sets off during a brutal snowstorm to confront the man who murdered his daughter. Renny, realizing he is missing, sets off to either stop or witness her husband’s act of vengeance.

missing stepsMissing Steps by Paul Cavanagh, 2015

Dean Lajeunesse doesn’t want to follow in his father’s footsteps. He’s not yet fifty, but his memory is starting to fail him. He vividly recalls how dementia whittled away at his dad and doesn’t want his own teenaged son, Aidan, to see him suffer the same fate. Of course, he could just be overreacting. Maybe it’s the stress of his on-again, off-again relationship with Valerie, his long-time live-in girlfriend, or the feeling that he’s not measuring up as a father that’s making him absent-minded. But before he can understand what’s happening to him, he’s dragged home to the sickbed of his estranged mother. There, he butts heads with his older brother, Perry, who’s remained loyal to their mother and has succeeded in almost every way that Dean hasn’t. As old family tensions bubble to the surface, Dean must try to hold on to Aidan’s respect as he relives his difficult relationship with his own father.

unbecomingUnbecoming by Jenny Downham, 2015

Three women – three secrets – one heart-stopping story. Katie, seventeen, in love with someone whose identity she can’t reveal. Her mother Caroline, uptight, worn out and about to find the past catching up with her. Katie’s grandmother, Mary, back with the family after years of mysterious absence and ‘capable of anything’, despite living with Alzheimer’s disease. As Katie cares for an elderly woman who brings daily chaos to her life, she finds herself drawn to her.

This is a book that will be enjoyed by young adults and adults alike.

Half a ChanceHalf a Chance by Cynthia Lord, 2014

For late primary or early secondary school-aged readers.

When Lucy’s family moves to an old house on a lake, Lucy tries to see her new home through her camera’s lens, as her father has taught her — he’s a famous photographer, away on a shoot. Will her photos ever meet his high standards? When she discovers that he’s judging a photo contest, Lucy decides to enter anonymously. She wants to find out if her eye for photography is really special — or only good enough. As she seeks out subjects for her photos, Lucy gets to know Nate, the boy next door. But slowly the camera reveals what Nate doesn’t want to see: his grandmother’s memory is slipping away, and with it much of what he cherishes about his summers on the lake. This summer, Nate will learn about the power of art to show truth. And Lucy will learn how beauty can change lives . . . including her own.

GrandmaGrandma by Jessica Shepherd, 2014

Oscar loves Grandma, and their time together is always lots of fun. As she becomes less able to look after herself, she has to go into a care home. More and more children are encountering dementia and its effects on their families. This touching story, told in Oscar’s own words, is a positive and practical tale about the experience. The factual page about dementia helps children talk about their feelings and find new ways to enjoy the changing relationship. Jessica Shepherd’s sensitive first picture book has grown out of her experiences in a variety of caring roles. This book includes many wonderful illustrations, including a childlike map of a residential care facility.

Fictional accounts of dementia – Post 1

Fictional accounts of dementia – Post 2

Kids and teens resources