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.

preschool      5-8.JPG     9-12     13-15  16+

 

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.

 

 

 

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

 

Summer reading

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 missingAll 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 +.

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. Unfailingly honest and touched with a dash of magical realism, Sarah Sullivan’s evocative debut novel delves into a family mystery and unearths universal truths about home, trust, friendship, and strength — all the things a boy needs.

The things between usThe 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 roseUnder 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

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, 2012still mine

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.

fireflyFirefly 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-dvdFinding 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.

Summer reading and viewing

Here in Melbourne, we are in the midst of a huge heatwave with temperatures in excess of 40 degrees Celsius for the past two days, with two more to go before a cool change this weekend. When it’s too hot to move, what better time is there to pick up a book/watch a movie and sit in front of a fan?  Here’s a selection of recent releases and popular titles on the topic of dementia for your consideration.

Remember: want anything? If you’re a member we can post it out to you. Many of these titles should be available from your local library as well. Don’t leave that position in front of the fan unless you are heading back to the fridge for more ice in that water!

Fiction: Hateship, friendship, courtship, loveship, marriage, Alice Munro

Hateship, friendship, courtship, loveship, marriage coverThis book includes 9 short stories by Nobel Prize in Literature winner, Alice Munro. One story describes the generosity and grace with which a husband accommodates the blossoming romance his wife, a person with dementia, enjoys with a fellow nursing-home resident. Each story is gripping, beautifully detailed and elegantly constructed. I dare you to set this book aside with anything but reluctance once you have opened it.

Teen fiction: Downeast Ledge: A novel, Norman Gilliland

Downeast Ledge book coverChanging 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 a person with dementia, Walter Sterling, 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.

Walt begins to exert a strange influence on Amber and her friends. Karen becomes determined to make a dream come true by taking up with Robin Dunning, a local seafarer with a shadowy past and questionable future. As Amber tries to fend off one catastrophe after another, she has to muster her courage and resourcefulness to save her friends and herself.

DVD: Away from her

away_from_herAfter forty years of marriage, Grant (Gordon Pinsent) and Fiona (Julie Christie) are still deeply in love and live an idyllic life of tenderness and serenity. It is only when Fiona begins to show signs of memory loss that cracks in their relationship show. Helplessly, Grant watches as he becomes a stranger to Fiona as her memory rapidly starts to deteriorate. Lyrical and heart-wrenching, Away From Her is a poignant love story about letting go of what you can’t live without.

Fiction: Still Alice, Lisa Genova

Still Alice coverThis is a very popular book in our library. The story is told from the perspective of the person with younger onset dementia, Alice Howland. It has been translated into 25 languages and this year will be made into a feature-length film starring Julieanne Moore (love!).  Here’s an excerpt from the précis:

Alice Howland is proud of the life she has worked so hard to build. A Harvard professor, she has a successful husband and three grown children. When Alice begins to grow forgetful at first she just dismisses it, but when she gets lost in her own neighbourhood she realises that something is terribly wrong. Alice finds herself in the rapid downward spiral of Alzheimer’s disease. She is only 50 years old.

While Alice once placed her worth and identity in her celebrated and respected academic life, now she must re-evaulate her relationship with her husband, her expectations of her children and her ideas about herself and her place in the world. Losing her yesterdays, her short-term memory hanging on by a couple of frayed threads, she is living in the moment, living for each day. But she is still Alice.

Memoir: Losing Clive to Younger Onset Dementia, Helen Beaumont

Losing CliveClive Beaumont was diagnosed with Younger Onset Dementia at age 45, when his children were aged just 3 and 4. He had become less and less able to do his job properly and had been made redundant from the Army the year before.
Clive’s wife, Helen, tells of how she and the rest of the family made it through the next six years until Clive died: the challenge of continually adapting to his progressive deterioration; having to address the legal implications of the illness; applying for benefit payments; finding nursing homes; and juggling her responsibilities as a wife, a mother and an employee. She also describes the successful founding and development of The Clive Project, a registered charity set up by Helen and others in a bid to establish support services for people with Younger Onset Dementia.
Younger Onset Dementia is comparatively rare, but not that rare. This story is for the family and friends of people with the condition, for the people themselves, and for the professionals working with them.

DVD: Iris

Iris DVD cover

Judi Dench and Kate Winslet bring to the screen one of the most extraordinary women of the 20th century, celebrated English author Iris Murdoch. As told by her unlikely soulmate, husband John Bayley, Iris first became known as a brilliant young scholar at Oxford whose boundless spirit dazzled those around her. Then, during a remarkable career as a novelist and philosopher, she continued to prove herself a women ahead of her time. Even in later life, as age and illness robbed Iris of her remarkable gifts, nothing could diminish her immense influence or weaken the bond with her devoted husband.

Fiction: Left Neglected, Lisa Genova

Left Neglected book coverWhilst not about dementia, this novel outlines acceptance of a dramatically changed life and provides wonderful detail on the cognitive and perceptual processing changes that accompany neurological change. Here’s the précis for more information:

Sarah Nickerson is like any other career-driven supermum in the affluent suburb where she leads a hectic but charmed life with her husband Bob and three children. Between excelling at work; shuttling the kids to football, day care, and piano lessons; convincing her son’s teacher that he may not, in fact, have ADD; and making it home in time for dinner, it’s a wonder this over-scheduled, high-flyer has time to breathe.

Sarah carefully manages every minute of her life, until one fateful day, while driving to work, she looks away from the road for one second too long. In an instant all the rapidly moving parts of her jam-packed life come to a screeching halt. A traumatic brain injury completely erases the left side of her world. For once, Sarah must relinquish control to those around her, including her formerly absent mother. As she wills herself to recover, Sarah must learn that a happiness greater than all the success in the world is close within reach, if only she slows down long enough to notice.

Teen fiction: Curveball: The Year I Lost My Grip, Jordan Sonnenblick

Curveball book coverAfter 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. Here’s some more from the précis to whet your appetite:

Pete’s freshman year doesn’t turn out as planned. A pitching accident over the summer ruins his arm. If he can’t play baseball, what is he supposed to do? If he isn’t the star pitcher, then who is he? Pete’s best friend and pitching partner, AJ, doesn’t believe Pete—he tells him he’ll be back to his normal self by spring training. To make matters more complicated, there’s something going on with Pete’s grampa—he’s acting weird and keeps forgetting important things, and Pete’s mother doesn’t want to talk about it.

Dementia resources for kids and teens

Explaining dementia is tough at any age, and when your children or grandchildren are feeling the effects of interacting with a person with dementia it can be difficult to know how to frame the discussion with them. Today we’ve focused on showing you items in our collection that can support those discussions and enable kids to investigate on their own terms.

We’ve divided up our resources based on age-ranges, but please use these as a guide only.  Choose the most relevant resources based on what you intuitively feel will appeal most to your audience!

Early Primary School kids (aged 5+)

Book: Wilfrid Gordon McDonald Partridge, M. Fox

WilfredGordonWilfrid Gordon McDonald Partridge, knows and likes all of the old folks in the home next door, but his favorite is Miss Nancy Alison Delacourt Cooper she has four names, too. Hearing that she has lost her memory, he asks the old folks what a memory is (“Something from long ago” ; “Something that makes you laugh;” “Something warm;” etc.), ponders the answers, then gathers up memories of his own (seashells collected long ago last summer, a feathered puppet with a goofy expression, a warm egg fresh from the hen) to give her. In handling Wilfrid’s memories, Nancy finds and shares her own.

Book: My Gran’s Different, S. Lawson

my_grans_diffCharlie’s gran doesn’t go to the footy, make cakes or work in the garden, because Charlie’s gran is different. A story of the love and complete acceptance that only a child can give.

Book: Let’s Talk About When Someone You Love has Alzheimer’s Disease, E. Weitzman

when_someone_you_love_has_ADKendra thought Grandma had forgotten about her.  This book explains Alzheimer’s from the perspective of an early to mid-primary school aged child.  It explains dementia, the stages of the disease, caring for someone with dementia and what that means, and normalises responses and emotions attached to seeing dementia affect a loved one.

For Mid Primary School kids (aged 6-8)

Book: Grandma Doesn’t Know Me Anymore, E. Gray

grandma_doesnt_know_meThis is the story of 11 year old Andrew, whose grandmother has dementia. Dementia and it’s impact on Andrew and his family is explained simply and thoughtfully.

Book: Grandpa’s Stories, R. Tonkin

grandpas_storiesPatrick’s grandpa loved to tell stories about his childhood – wonderful stories about pet foxes and fun pranks; life as it was when Grandpa was a boy. Patrick has heard these stories often and knows them very well. So when Grandpa struggles with the symptoms of Alzheimer’s disease and has trouble remembering, it is Patrick who must tell Grandpa’s stories.

Book: Sachiko Means Happiness, K. Sakai

sachikoA simply told, understated story of young Sachiko’s acceptance of her grandmother’s Alzheimer’s disease is illustrated in warm, sunset tones, with insets featuring traditional Japanese motifs. The story is touching without being sentimental, and the setting of this small drama makes the book useful for those looking for contemporary images of Asian-American children.

Book: The Smell of Chocolate, B. McGuire

smellofchocolateThis book incorporates a story of Ben and his grandfather, Pog, which captures what living with a person with dementia is like – the highs and the lows. It also contains a very accessible ‘fact file’ on Alzheimer’s, information on brain change, the difference between forgetting and memory loss, ways to connect with someone with dementia, and some messages of hope and insight to conclude the book.

Book: Mile-High Apple Pie, L. Langston and L. Gardiner

mile_high_apple_pieAgainst the background of family life, this picture-book tells the story of a young girl’s evolving relationship, including growing understanding and emotional adjustment, with her grandmother who comes to live with the family when she begins to lose her memory.

For Late Primary School kids (aged 8 – 10)

Booklet: The Milk’s in the Oven

milks-in-oven-rebrand-compI can’t say it better than the intro to this great little booklet, so without further ado…

“Some of you may know somebody who has dementia. Maybe they live with you and you help to take care of them. If so, you won’t need me or anyone else to tell you how difficult and upsetting it can be. You want to look after people you love, but it’s not easy to know what to do for the best when someone has dementia. Often people with dementia forget how to do things, so they might put the milk away in the oven, instead of the fridge. Sometimes you feel really angry because nothing you do seems to make any difference. The booklet tells you about how people with dementia behave and feel, and gives you a few ideas to try and help you understand more.” p. 2
This booklet contains some great exercises for giving kids some insight into what having dementia might be like and ways to connect with a person with dementia. It’s available online. Ah, the wonders of the internet!

Book: Captain Mack, J Roy

captain_mackThis book describes the unlikely friendship between a boy and a man with dementia. Told from Danny, a late primary school-aged boy’s perspective its a unique story about relating to a person with dementia, focusing on the person and not the illness and finding the joy in the connection.

Book: The Memory Box, M. Bahr

When Gramps realizes he has Alzheimer’s disease, he starts a memory box with his grandson, Zach, to keep memories of all the times they have shared.The_memory_box

For Late Primary – Early Secondary

Book: Pearl Verses the World, S. Murphy

pearl_vs_worldA moving illustrated verse novel about a girl dealing with isolation at school, and with her grandma’s illness at home.
At school, Pearl feels as though she is in a group of one. Her teacher wants her to write poems that rhyme but Pearl’s poems don’t. At home, however, Pearl feels safe and loved, but her grandmother is slowly fading, and so are Mum and Pearl. When her grandmother eventually passes away, Pearl wants life to go back to the way it was and refuses to talk at the funeral. But she finds the courage to deliver a poem for her grandmother that defies her teacher’s idea of poetry – her poem doesn’t rhyme; it comes from the heart. A powerful and moving story about loss, grief and isolation. Deals with sensitive issues of dementia from the child’s perspective.

Book: What’s Wrong with Grandma?: A Family’s Experience with Alzheimer’s, M. Shawyer

whats_wrongWhat’s Wrong with Grandma? follows one family’s journey through the early stages of Alzheimer’s disease, as told by the youngest child, Ellen. Along with her family, Ellen tries to fit together all the scattered pieces of puzzle concerning her grandmother’s behavior. Young Ellen expresses, as only a child can, the frustration, sadness, and even anger felt toward Grandma’s peculiar behavior, her lapses of memory, and her unexplained fears. But she also captures the warmth and humor of special moments the family shares with Grandma. Readers will learn, as Ellen does, that there are no simple answers, and that with understanding and love families can embrace their elders with Alzheimer’s and cherish their time together.

Book: Back to Blackbrick, S. Moore Fitzgerald

BackBlackbrickPitched at late primary school kids and early secondary students.  This is a well-written, insightful and modern story of a young care-giver’s struggles to accept the many changes and responsibilities being forced upon him and still connect with the grandfather he knows and loves. It elegantly identifies and articulates the multi-layered strands of grief and loss and day-to-day coping that families experiencing dementia know all too well.‘The ghosts in your life don’t ever really go away. Every so often they will whisper to you, and they will brush past you and maybe you will even feel their misty sweet breath on your skin. It’s fine. Don’t worry about it too much.’

Lost memories, lost times, lost lives – a stunning new debut novel. Cosmo’s brother Brian died when he was ten years old. His mum hides her grief by working all the hours God sends and Cosmo lives with his grandparents. They’ve been carefree days as Granddad buys him a horse called John and teaches him all he knows about horses. But the good times have to come to an end and although he doesn’t want to admit it, Cosmo knows his Granddad is losing his mind. So on one of the rare occasions when Granddad seems to recognise him, Cosmo is bemused that he gives him a key to Blackbrick Abbey and urges him to go there. Cosmo shrugs it off, but gradually Blackbrick draws him in . . . Cosmo arrives there, scared and lonely, and is dropped off at the crumbling gates of a huge house. As he goes in, the gates close, and when he turns to look, they’re rusty and padlocked as if they haven’t been opened in years. Cosmo finds himself face to face with his grandfather as a young man, and questions begin to form in his mind: can Cosmo change the course of his family’s future?

For Teens

Website: When Dementia is in the House

when_dementiaThis website is a truly fantastic thing.  Plain-speaking and to the point, it describes the experience of living with a person with dementia, advice from others in the same situation, pitfalls and how to avoid them and useful information from medical professionals.

Short film: My Name is Lisa, Ben Shelton Films

This utterly brilliant short film illustrates in heart-rending detail what it’s like to live with a parent with dementia. I highly recommend you watch it, although it may be wise to have a tissue or two handy!

Book: Understanding Dementia: A guide for young people

understanding_demAside from a slightly naff name, I mean who exactly are ‘young people’? It’s a confusing term to say the least! This book is pretty great. It identifies common questions, answers them and gives some great suggestions on how to cope and what resources you have to assist you. Also, as well as coming in to grab our copy, you can access it online.

Book: The Long and Winding Road, J Gillard

long_and_winding_roadThe Long and Winding Road describes the different forms of dementia and what happens to people with dementia and to their families. It outlines how young people may be affected and how they may feel, and offers practical suggestions to help overcome some of the difficulties. The book also aims to dispel the fear and loneliness experienced by young people encountering dementia in someone they love. Written in 1995, it’s a piece from our ‘way back collection’ but worth a look.

Book: Fading Memories: An Adolescent’s Guide to Alzheimer’s Disease

fading_memoriesWhen a loved one is diagnosed with Alzheimer’s Disease, the whole family is affected. Fading Memories is written by young people who are coping with Alzheimer’s Disease in their lives. This book outlines what Alzheimer’s Disease is and what happens to a person who has Alzheimer’s. You will find out how you can help care for your loved one with Alzheimer’s, and how you can maintain a positive relationship with the Alzheimer’s patient, your family and friends. In addition to practical information, Fading Memories includes personal essays from adolescents who have experience living with Alzheimer’s first-hand.