Children, teenagers, young adults and dementia

Posted on October 22, 2018 by Dementia Australia Library

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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

dementia-in-my-family-ages

“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

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.

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 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_forgets Grandma 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 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.
Ebook

beforeyouforget Before 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

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
Abstract

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), 324–338
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. Dementia, 17(2), 180–198.
Abstract

Teens and young adults- dementia in fiction 2017

Dementia resources for young people 2016

Dementia resources for kids and teens 2013

Fiction and dementia

Posted on January 9, 2018 by Dementia Australia Library

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Stories have been told for as long as we have been able to speak. The writing and reading of fiction to facilitate the telling and retelling of stories is an important aspect of being human. The enduring appeal of the novel is demonstrated by the place of libraries and bookshops in the community, the flourishing of book groups and the popularity of creative writing courses.
The body of work weaving the topic of dementia into everyday stories continues to grow.
Take a look at some of the standout titles added in 2017 and consider for your summer reading list.

A full list of fiction held in the Dementia Australia libraries can be found here.

Rain birds / Harriet McKnight (2017)
Alan and Pina have lived contentedly in isolated – and insular – Boney Point for thirty years. Now they are dealing with Alan’s devastating early-onset Alzheimer’s diagnosis. As he is cast adrift in the depths of his own mind, Pina is left to face the consequences alone, until the arrival of a flock of black cockatoos seems to tie him, somehow, to the present.

Nearby, conservation biologist Arianna Brandt is involved in a project trying to reintroduce the threatened glossy black cockatoos into the wilds of Murrungowar National Park. Alone in the haunted bush, and with her birds failing to thrive, Arianna’s personal demons start to overwhelm her and risk undoing everything.

At first, when the two women’s paths cross, they appear at loggerheads but – in many ways – they are invested in the same outcome but for different reasons.
Ultimately, unexpected events will force them both to let go of their pasts and focus on the future.

The gingerbread house / Kate Beaufoy (2017)

Recently-redundant Tess is keen to start work on a novel and needs to make it work. She and her freelance journalist husband Donn desperately need the money and three weeks looking after Donn’s aged mother while the carer takes a break seems like an opportunity to get started. She knows it’ll be tough looking after Eleanor, who has increasingly severe dementia, but she’ll surely find some time for herself, won’t she? Arriving at the isolated country house their daughter Katia has named The Gingerbread House, a tearful Tess begins to realise that she has a far more difficult few weeks ahead than expected. Her mother-in-law is now in need of constant attention and Donn can’t help as he has to stay in town for work. Narrated by Katia – their only child – who prefers not to speak but observes everything, The Gingerbread House is a deeply moving and compassionate story of a family and its tensions and struggles with her grandmother’s dementia, as the reclusive teenager describes the effect it has on everyone in a strangely detached but compassionate way.

goodbye vitamin Goodbye, vitamin / Rachel Khong (2017)

Ruth is thirty and her life is falling apart: she and her fiancé are moving house, but he’s moving out to live with another woman; her career is going nowhere; and then she learns that her father, a history professor beloved by his students, has Alzheimer’s. At Christmas, her mother begs her to stay on and help. For a year. Goodbye, Vitamin is the wry, beautifully observed story of a woman at a crossroads, as Ruth and her friends attempt to shore up her father’s career; she and her mother obsess over the ambiguous health benefits – in the absence of a cure – of dried jellyfish supplements and vitamin pills; and they all try to forge a new relationship with the brilliant, childlike, irascible man her father has become.

Young adult writing

beforeyouforget Before you forget / Julia Lawrinson (2017)

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.

For the younger readers

grandma_forgets

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

A warm, uplifting picture book about a family bound by love as they cope with their grandmother’s dementia. When your grandmother can’t remember your name it should be sad, but maybe it is just an opportunity to tell her more often how much you love her. 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.

Past posts highlighting fiction

2017

2016

Teens and young adults- dementia in fiction

Posted on March 7, 2017 by Dementia Australia Library

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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)

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)

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)

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)

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)

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)

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)

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)

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.

Earlier posts relating to children and young adults

Dementia resources for young people

Dementia resources for kids and teens

Dementia resources for young people

Posted on July 1, 2016 by Dementia Australia Library

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_small Children 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 remember When 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 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 grandpa Take 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)

weeds A 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 grandpa This 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 house Gillian 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 cage Alex’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 girl Jude’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 bees When 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)

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.

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

Posted on January 22, 2016 by Dementia Australia Library

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.

A 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 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.

The 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.

The 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.

Elizabeth 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 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 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.

Unbecoming by Jenny Downham, 2015

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

Half 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.

Grandma 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

Summer reading

Posted on January 9, 2015 by Dementia Australia Library

Reading about dementia is not, perhaps, what immediately springs to mind when considering your summer book list but there is an ever-growing body of work that interweaves accurate representations of dementia with very good story-telling. Here’s three for your consideration. If you would like to borrow any of these books, please contact us at the library or it may also be possible to source these from your local library.

All That’s Missing by Sarah Sullivan (2013)

This book has appeal for teenage and adult readers alike. A fantastic story, told with sensitivity and insight into the complicated situations families find themselves in and the unique solutions that can sometimes be found when circumstances demand it. All That’s Missing would be suitable for readers from the age of 12 years +.

The Things Between Us – Living Words: Anthology 1 – Words and Poems of People Experiencing Dementia / Illustrated by Julia Miranda, Introduction by Lynda Bellingham, Compiled by Susanna Howard (2014)

‘This is an important collection of witnessings to an important subject, and valuable for what it addresses, as well as the way it addresses.’ Sir Andrew Motion

‘This is poetry from a place where we assume there are no more words to come, which makes it all the more powerful, moving and important. This book should be essential reading for every surgery care home and hospital and for all of us who are living with loved ones with dementia.’ Meera Syal OBE

‘I would so love to have had this book when my mother was struggling with Alzheimer’s.’ Lynda Bellingham OBE

Living Words has been working in the UK with people experiencing dementia since late 2007. This anthology contains a selection of their words and poems.

Under the rose bush / Jane Fry ; illustrator Sandi Harrold ( 2013)

Under the rose bush is a short story which explores a touching relationship between a young girl and her grandmother who develops Alzheimers disease.

Sarah and her Granny are great friends. They spend a lot of time playing and learning together, gradually Sarah notices changes in her Granny. Sarah learns to adjust to the situation as her grandmother ages. Her story provides a sense of optimism despite the grief of eventually losing her beloved grandmother.

The book helps children to understand the illness and teaches them how to cope with supporting their grandparents through a difficult time.

Films about dementia

Posted on December 4, 2014 by Dementia Australia Library

A growing collection of resources exists about dementia – extensive research articles, non-fiction, fiction, memoirs, poetry and film. Today’s post covers three films about dementia—or dementia-like symptoms—and the impact dementia has on the person with dementia, those caring for them and others in their life.

We have many more films available about dementia, so don’t hesitate to come in and see us if you’d like to find out more about our film collection. If you’re interested in any of these titles, you can request them here – remember, you have to be a member of Alzheimer’s Australia Vic.

Still mine, 2012

This is an intimate portrait of Frank, a man in his late eighties who finds himself caring for his wife of 61 years. Whilst no formal diagnosis is ever made, it is apparent that Irene has dementia and requires more support to continue to live at home. Facing the realities of their changing circumstances, Frank decides to build a dwelling more suitable than their long-term family home and is thrust into the contemporary world of permits, plans, building codes and the consequences of not complying with these restrictions.

Whilst taking on more tasks within the home, to compensate for Irene’s changing abilities, Frank also contends with the concerns of his seven children and their preference to have Irene, or possibly both Frank and Irene, getting professional care or support.

Still Mine is ultimately a story about a relationship between husband and wife and their staunch determination to remain together and care for one another. At times, this means other family members are excluded and disregarded. Yet no one doubts their devotion to one another. It is a story of empowerment and acceptance in very stressful circumstances. Whilst their situation bends them, it does not break them and Still Mine is, among other things, a story of triumph.

Firefly dreams, 2004

A Japanese sub-titled film about a troubled teenage girl who forges an unlikely friendship with an older person with dementia, becoming her carer and companion. This coming of age story focuses on 17 year old Naomi, sent to spend the summer holidays with her aunt in a small Japanese village whilst her parents navigate their separation and increasing inability to cope with Naomi’s behaviour. Initially, Naomi is stifled by the slower pace and physical demands of working with her aunt’s family in the hotel they run. She misses the city and is frustrated by her cousin, Yumi. Naomi goes to visit Mrs Koide, whom she knows from her childhood and at first is baffled by the inconsistencies in her elderly relative’s behaviour. As the summer passes, Naomi grows closer to Mrs Koide and her aunt’s family and whilst sometimes puzzled by Mrs Koide’s abrupt changes of topic, she tolerates and supports Mrs Koide’s needs.

Dementia is not overtly referred to in this film and the carer role that Naomi occupies is quite lightweight – focused on companionship rather than the day-to-day requirements of caring. The representation of dementia in this film focuses on some fairly mild forgetfulness, the person with dementia revisiting and re-enacting key past life experiences and some hospitalisation scenes.

In this film, the person with dementia dies and the implication is that her death was directly linked to dementia.

Finding Nemo, 2003

Although not immediately a dementia film, in Finding Nemo the character of Dory exhibits dementia-like symptoms which may help a younger child understand and experience dementia in a film.

This film, about a fish called Marlin looking for his lost son, Nemo, with the help of an often-forgetful and distracted fish called Dory. Dementia is not directly referred to in the film. Instead, Dory describes her condition as ‘short term memory loss that runs in the family’. As a result, the short term memory issues that can be experienced as part of dementia are front-and-centre, however the film also showcases Dory as a real person, not a caricature and someone who is able to contribute in her own right to her friend’s predicament. It shows some of the challenges of dementia, where some very routine procedural activities remain perfectly intact whilst other newer memories are tenuous and readily forgotten.

Finding Nemo also deals with Dory’s own anxiety, frustration and sometimes sadness with the limitations of her short term memory issues.

Overall, for younger children this could be a good film as a discussion piece to expand on a child’s experience of dementia and perhaps through Dory, their feelings about dementia.

Note: these reviews are the opinion of an individual, and do not represent the views of Alzheimer’s Australia, or Alzheimer’s Australia VIC.