Children, teenagers, young adults and dementia

 

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Dementia affects everyone in a family. Many resources are available for adults but only a few resources are specifically designed for the information needs of  children, teenagers and young adults  – indeed kids of all ages.
In a nod to National Children’s Week we take a closer look at some of the recent books, websites, articles  and blogs that support the younger members in our community.

 


Dementia in my family is a   comprehensive website catering to 5 broad age categories as well as a section talking directly to parents supporting a child who is living with dementia. Let’s take a closer look at some of the different resources offered by Dementia in My Family

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“Heather’s House” is an interactive game where children will learn more about how a person living with dementia might do things a little differently and how they can support them around the home. Heather’s house appears in the 5-8 and 9-12 yo sections under About dementia

 

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What can help?
This series of interactive cards featuring an appealing neuron, and assists children to identify the different feelings they may be experiencing through the course of a day.

 

 

There are a number of videos available on this website such as the following Talking dementia footage of teens discussing the impact of dementia on their lives.

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my book about brains, change and dementia

My book about brains, change and dementia/ Lynda Moore and George Haddon (2018)

‘Sometimes, a person’s brain gets sick with a disease called dementia.’
What does dementia do to the brain? And how can we help if someone we know, like a parent or a grandparent, has the disease?
Originally developed for the website above, this book breaks down misconceptions about dementia and speaks directly to children aged under 5 about the realities of the disease, using age appropriate language in an engaging and informative way. It reassures parents of the value of open and honest conversation about the challenges raised by dementia and offers advice and support in the opening ‘Guide for grown ups’. It includes a diverse audience of characters, to emphasise that ANY child can be impacted by dementia in their loved ones. Unlike traditional storybooks, the ending provides a question for the adult and child reading it to ponder together.


I smile for grandpaI smile for grandpa (2018)

When Grandpa is diagnosed with a dementia disease, Little Buddy realizes playing soccer together won’t quite be the same. But, while the activities that Grandpa can do are changing, there is still much fun to be had. In fact, spending time with each other is as special as ever!

Using delightful and tender illustrations, dementia is compassionately explored through the innocent eyes of a child to create a greater understanding of the disease. Tips for speaking with your child as well as a useful Q&A are also included to enhance learning.

 


grandma_forgetsGrandma forgets  /  Paul Russell and Nicky Johnston.  (2017)

Over the years, the little girl has built up a treasure trove of memories of time spent with Grandma: sausages for Sunday lunch, driving in her sky-blue car to the beach, climbing her apple trees while she baked a delicious apple pie, and her comforting hugs during wild storms. But now, Grandma can’t remember those memories. She makes up new rules for old games and often hides Dad’s keys. This is a warm, hopeful story about a family who sometimes needs to remind their grandmother a little more often than they used to about how much they care. She might not remember any of their names but she will always know how much she is loved.

 


forgetting-fosterForgetting Foster  /  Dianne Touchell  (2016)

Foster suddenly recognised the feeling that rolled over him and made him feel sick. It was this: Dad was going away somewhere all on his own. And Foster was already missing him.

Foster Sumner is seven years old. He likes toy soldiers, tadpole hunting, going to school and the beach. Best of all, he likes listening to his dad’s stories.

But then Foster’s dad starts forgetting things. No one is too worried at first. Foster and Dad giggle about it. But the forgetting gets worse. And suddenly no one is laughing anymore.
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beforeyouforgetBefore you forget  /  Julia Lawrinson.  (2017)

At times funny, at times heartbreaking, this is an ultimately uplifting story about the delicate fabric of family and friendship, and the painful realisation that not everything can remain the same forever.

Year Twelve is not off to a good start for Amelia. Art is her world, but her art teacher hates everything she does; her best friend has stopped talking to her; her mother and father may as well be living in separate houses; and her father is slowly forgetting everything. Even Amelia.


Blog post – Talking about dementia with very young children: why it helps and how to go about it   / Lynda Moore, Family clinician Dementia Australia, September 24, 2018

In this blog, Lynda Moore, family clinician at Dementia Australia  introduces the new picture book about dementia, which encourages good communication with children when someone in the family has dementia.
Answering questions like ‘What is dementia?’, ‘Why might parents, grandparents and teachers find it hard to talk about dementia with young children?’ Lynda outlines the benefits of having an open conversation with young children about the condition and how this new Dementia Australia book can help.

Link to Jessica Kingsley publishers blog

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Caroline Gelma, Kate Rhames (2018) “I have to be both mother and father”: The impact of Young-onset dementia on the partner’s parenting and the children’s experience. Dementia, Epub July 12
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Sikes, P., Hall, M. (2017). Every time I see him he’s the worst he’s ever been and the best he’ll ever be”: Grief and sadness in children and young people who have a parent with dementia. Mortality, 22(4), 324338
Abstract

Sikes, P., Hall, M. (2016). “It was then that I thought ‘whaat? This is not my dad”: The implications of the ‘still the same person’ narrative for children and young people who have a parent with dementia. Dementia17(2), 180–198.
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Related posts

Teens and young adults- dementia in fiction 2017

Dementia resources for young people 2016

Dementia resources for kids and teens 2013

 

2018 LIBRARY digital footer

Teens and young adults- dementia in fiction

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Burying your head in a novel isn’t just a way to escape the world, fiction has the potential to improve a reader’s capacity to understand what others are thinking and feeling.
Last month we looked at dementia in fiction for adult readers. Today we take a look at some of the fiction available to our teen readers.

All of these titles are available for loan from Alzheimer’s Australia libraries or pop into your local public library and explore what they have.

 

Forgetting Foster  /  Dianne Touchell  (2016)forgetting-foster

He could no longer remember the first thing his father forgot.
Foster Sumner is seven years old. He likes toy soldiers, tadpole hunting, going to school and the beach. Best of all, he likes listening to his dad’s stories.
Forgetting Foster is a compassionate observation which exposes the heartbreak and collateral damage to a family after the father is diagnosed with Alzheimer’s disease.

 

Pop  /  Gordon Korman  (2009)pop

Lonely after a midsummer move to a new town, sixteen-year-old high-school quarterback Marcus Jordan becomes friends with a retired professional linebacker who is great at training him, but whose childish behavior keeps Marcus in hot water.
He can’t believe his good luck when he finds out that Charlie is actually Charlie Popovich, or “the King of Pop,” as he had been nicknamed during his career as an NFL linebacker. But that’s not all. There is a secret about Charlie that his own family is desperate to hide.

Unbecoming  /  by Jenny Downham  (2015)unbecoming

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.

Downeast ledge: a novel  /  Norman Gilliland  (2013)downeast ledge_web

Changing times and personal failings have brought life to a standstill for the natives of Ashton, Maine. On the far side of the river that divides the coastal town, the prosperous summer residents come and go, seemingly complacent, without having much to do with the locals. But when Amber Waits crosses the river to take a job as a caregiver to Walter Sterling who has dementia, all bets are off. She finds herself thrown into the troubled lives of Walt, his distracted wife Geneva, and their resentful and reckless daughter Karen. And although he seems unaware of his surroundings, Walt begins to exert a strange influence on Amber and her friends.

The whole stupid way we are  /  N. Griffin  (2013)the whole stupid way we are_web

During a cold winter in Maine, fifteen-year-old Dinah sets off a heart-wrenching chain of events when she tries to help best friend and fellow misfit Skint deal with problems at home, including a father who has early onset dementia.

 

 

 

Curveball : the year I lost my grip  /  Jordan Sonnenblick  (2012)Curveball book cover

After an injury ends former star pitcher Peter Friedman’s athletic dreams, he concentrates on photography which leads him to a girlfriend, new fame as a high school sports photographer, and a deeper relationship with the beloved grandfather who, when he realizes he has dementia, gives Pete all of his professional camera gear.

 

 

The story of forgetting : a novel  /  Stefan Merrill Block  (2008)story of forgetting_2

At seventy, Abel Haggard is a hermit, resigned to memories of the family he has lost, living in isolation on his family’s farm amid the encroaching suburban sprawl of Dallas. Hundreds of miles to the south in suburban Austin, fifteen year old Seth Waller is devastated when his mother’s increasingly eccentric behaviour is diagnosed as a rare, early-onset form of Alzheimer’s. He begins an ’empirical investigation’ to uncover the truth about her genetic history in order to understand the roots of this terrible disease. Though neither one knows of the other’s existence, Seth and Abel share a unique tradition: as children, both were told stories of Isadora, a fantastical land free from the sorrows of memory.

All That’s Missing  /  by Sarah Sullivan  (2013)all that's missing

Arlo’s grandfather travels in time. Not literally — he just mixes up the past with the present. Arlo holds on as best he can, fixing himself cornflakes for dinner and paying back the owner of the corner store for the sausages Poppo eats without remembering to pay. But how long before someone finds out that Arlo is taking care of the grandfather he lives with instead of the other way around? When Poppo lands in the hospital and a social worker comes to take charge, Arlo’s fear of foster care sends him alone across three hundred miles. Armed with a name and a town, Arlo finds his only other family member — the grandmother he doesn’t remember ever meeting. But just finding her isn’t enough to make them a family.

 

Click on the appropriate age group below to visit the Dementia in my family website for reading lists for all our younger readers.

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Earlier posts relating to children and young adults

Dementia resources for young people

Dementia resources for kids and teens

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.