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 in fiction

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If fiction can be said to have some larger purpose than to entertain or enlighten, it is surely the creation of empathy. A play, a movie or a novel can place us directly in somebody else’s shoes.
Thoughtful and considered fiction can serve as a form of advocacy and insight into living with a diagnosis of dementia.

This post highlights some recently published fiction with a theme of dementia.

A full list of fiction  held in the Alzheimer’s Australia libraries can be found here.

forgetting-fosterForgetting Foster  /  Dianne Touchell  (2016)
‘Foster suddenly recognised the feeling that rolled over him and made him feel sick. It was this: Dad was going away somewhere all on his own. And Foster was already missing him.’
Foster Sumner is seven years old. He likes toy soldiers, tadpole hunting, going to school and the beach. Best of all, he likes listening to his dad’s stories. But then Foster’s dad starts forgetting things. No one is too worried at first. Foster and Dad giggle about it. But the forgetting gets worse. And suddenly no one is laughing anymore.

i-like-you-just-fineI like you just fine when you’re not around  /  Ann Garvin  (2016)
Everything is falling apart in psychologist Tig Monahan’s life. Her mother’s dementia is wearing her out; her boyfriend takes off for Hawaii without her; and her sister inexplicably disappears, leaving her newborn behind. Tig finds herself unemployed and part of the sandwich generation trying to take care of everyone and failing miserably. Just when she thinks she can redefine herself on the radio as an arbiter of fairness, she discovers a family secret that nobody saw coming. 

an-absent-mindAn Absent Mind  /  Rill, Eric  (2015)
Seventy-one, and a man used to controlling those around him, Saul finds himself slipping into what he describes as his slow dance with death.His ramblings, humor, emotions, lucid moments, and confusion are laid bare, as well as the thoughts and feelings of his loved ones: his wife, Monique, conflicted and depressed caring, yet angry; his daughter, Florence, compassionate, yet proper and reserved; his son, Joey, self-centered and narcissistic, seemingly indifferent to his family s challenges; and his doctor, an Alzheimer s specialist, who cares for Saul until his final days.

the-things-we-keepThe things we keep  /  Sally Hepworth  (2016)
Anna Forster, in the early stages of Alzheimer’s disease at only thirty-eight years old, knows that her family is doing what they believe to be best when they take her to Rosalind House, an assisted living facility. She also knows there’s just one other resident her age, Luke. What she does not expect is the love that blossoms between her and Luke even as she resists her new life at Rosalind House. As her disease steals more and more of her memory, Anna fights to hold on to what she knows, including her relationship with Luke. 

inside-the-obriensInside the O’Briens  /  Genova, Lisa  (2015)
Joe O’Brien is a Boston cop; his physical stamina and methodical mind have seen him through decades policing the city streets, while raising a family with his wife Rosie. When he starts committing uncharacteristic errors – mislaying his police weapon, trouble writing up reports, slurred speech – he attributes them to stress. Finally, he agrees to see a doctor and is handed a terrifying, unexpected diagnosis: Huntington’s disease. Not only is Joe’s life set to change forever, but each of his four grown-up children has a fifty per cent chance of inheriting the disease.

the-woman-next-doorThe woman next door  /  Liz Byrski  (2016)
A story of neighbours, retirement and aging. The characters in this novel embody women taking charge of their lives and growing old creatively.

 

 

 

PLAYS

the-other-placeThe Other Place  /  White, Sharr  (2013)
Just as Juliana Smithton’s research leads to a potential breakthrough, her life takes a disorienting turn. During a lecture to colleagues at an exclusive beach resort, she glimpses an enigmatic young woman in a yellow bikini amidst the crowd of business suits. One step at a time, a mystery unravels as contradictory evidence, blurred truth and fragmented memories collide in a cottage on the windswept shores of Cape Cod.

 

the-mother-and-the-fatherThe Father  /  Florian Zeller, translated by Christopher Hampton  (2015)
The Father. “A wonderfully peculiar, quietly stunning depiction of dementia…A controlled, unforgettable portrait of losing your memory.” (Times). “One of the most acute, absorbing and confronting portraits of dementia I’ve ever seen.” (Daily Telegraph). “A play that constantly confounds expectations and works almost like a thriller, with a sinister Pinteresque edge.” (Guardian). The Father was awarded the Moliere Award for Best Play 2014.

 

GRAPHIC NOVELS

wrinklesWrinkles  /  Paco Roca , (author, artist)  (2015)
Admitted to a home for the elderly because he has Alzheimer’s disease, for Ernest community life feels like an ordeal. But soon he accepts his new environment and decides to fight to escape from giving in to his destiny. For the author, the human community is like a library where books are piled up in mountains populated by yellowing paper of dreams and fantasies. Where a life is covered in wrinkles, and some see the writing of their pages disappear, sheet after sheet, until they become completely blank. Despite this, the most intense emotions survive, preserved as a hidden treasure on a remote island.

 

roses-in-decemberRoses in December : A Story of Love and Alzheimer’s  /  Tom Batiuk and Chuck Ayers  (2015)
Through the deceptively simple medium of the daily comic strip, Tom Batiuk and Chuck Ayers address the profound effects of Alzheimer’s disease in a thoughtful and occasionally humorous way. Roses in December includes a resource guide for caregivers, patients, and practitioners

 

Fictional accounts of dementia – 2016 post

 

How do I choose?

Alzheimer’s Australia libraries combined have a collection of over 14,000 resources related to dementia. This year there have been in excess of 8500 loans from our collections.

Undoubtedly a great resource available to the community…but where do you begin?

When visiting the local bookshop we all welcome the influence of an award sticker or a book that proudly boasts itself a staff recommended read.  Taking inspiration from this and to assist our users to navigate our collection we have developed the Alzheimer’s Australia staff recommend sticker.

recommended-read-sticker

Our key criteria

  • Well written/produced
  • Consistently good feedback from borrowers
  • Positive reviews from specialist clinicians
  • The library staff loved it!

So what have our users been borrowing this year? Below is a selection from the top 20 in no particular order.

As always we welcome your feedback and would love to learn what would be on the top of your list.

DVD: Alive inside: A story of music & memory  /  A film by MRossato-Bennett  (2014)

Alive Inside DVDAlive Inside is a joyous cinematic exploration of music’s capacity to reawaken our souls and uncover the deepest parts of our humanity. Filmmaker Michael Rossato-Bennett chronicles the astonishing experiences of individuals around the country who have been revitalized and awakened by the simple act of listening to the music of their youth.

 

Green vanilla tea  /  Marie Williams  (2013)

green-vanilla-tea_smlWhen Marie Williams’ husband Dominic started buying banana Paddle Pops by the boxful it was out of character for a man who was fit and health conscious. Dominic, Marie and their two sons had migrated to Australia to have a life where they shared more family time — when gradually Dominic’s behaviour became more and more unpredictable. It took nearly four years before there was a diagnosis of early onset dementia coupled with motor neurone disease. Marie began to write, as she says, as a refuge from the chaos and as a way to make sense of her changing world.

DVD:  Glen Campbell…I’ll Be Me  (2014)

glen-campbellIn 2011, music legend Glen Campbell set out on an unprecedented tour across America. He thought it would last 5 weeks; instead it went for 151 spectacular sold out shows over a triumphant year and a half. What made this tour extraordinary was that Glen had recently been diagnosed with Alzheimer’s disease. He was told to hang up his guitar and prepare for the inevitable. Instead, Glen and his wife went public with his diagnosis and announced that he and his family would set out on a ‘Goodbye Tour.’ The film documents this extraordinary journey as he and his family attempt to navigate the wildly unpredictable nature of Glen’s progressing disease using love, laughter and music as their medicine of choice.

Fiction: Still Alice  /  Lisa Genova  (2009)

still alice movieAlice Howland is proud of the life she worked so hard to build. A Harvard professor, she has a successful husband and three grown children. When she begins to grow forgetful, she dismisses it for as long as she can, but when she gets lost in her own neighbourhood she knows that something has gone terribly wrong.

 

Caring for a loved one with dementia : a mindfulness-based guide for reducing stress and making the best of your journey together  /  Marguerite Manteau-Rao  (2016)

caring-for-a-loved-oneAn approach to caring with calm, centered presence; responding  with compassion; and maintaining authentic communication, even in the absence of words. Most importantly,  discover ways to manage the grief, anger, depression, and other emotions often associated with dementia care.

 

Before I Forget: How I Survived a Diagnosis of Younger-Onset Dementia at 46  /  Christine Bryden  (2015)
before-i-forget-by-christine-bryden_sml

When she was just 46, Christine Bryden – science advisor to the prime minister and single mother of three daughters – was diagnosed with younger-onset dementia. Doctors told her to get her affairs in order as she would soon be incapable of doing so. Twenty years later she is still thriving, still working hard to rewire her brain even as it loses its function.

 

The 36-hour day : a family guide to caring for people with Alzheimer disease, other dementias, and memory loss in later life  /  Nancy L. Mace, Peter V. Rabins  (2011)

36hrdayInformation on diagnostic evaluation; resources for families who care for people with dementia; legal and financial information;  information on nursing homes and other communal living arrangements; research, medications, and the biological causes and effects of dementia.

 

What the Hell Happened to My Brain? : Living with dementia  /  By Kate Swaffer   (2016)

what-the-hell-happened-to-my-brainKate Swaffer was just 49 years old when she was diagnosed with a form of younger onset dementia. In this book, she offers an all-too-rare first-hand insight into that experience, sounding a clarion call for change in how we ensure a better quality of life for people with dementia. Kate describes vividly her experiences of living with dementia, exploring the effects of memory difficulties, loss of independence, leaving long-term employment, the impact on her teenage sons, and the enormous impact of the dementia diagnosis on her sense of self.

DVD: Filling the day with meaning  /  Teepa L Snow (2011)

Through learning about what makes an activity engaging and valuable, how to create a safe and inviting environment and more with early-onset dementia patients, this DVD helps professional caregivers to provide the best care for people with dementia.

Loving someone who has dementia : how to find hope while coping with stress and grief  /  Pauline Boss  (2011)

loving-someone-who-has-dementiaOffers approaches to understand and cope with the emotional strain of care-giving. Boss’s book builds on research and clinical experience, yet the material is presented as a conversation. She shows you a way to embrace rather than resist the ambiguity in your relationship with someone who has dementia.

 

 

Lewy body disease (Lewy body dementia)

You may already know that dementia describes a collection of symptoms that are caused by disorders affecting the brain. It is not one specific disease. Lewy body disease is one of the diseases that causes dementia.

This post provides a set of resources specifically about Lewy body disease.

lewy body dis alzaust webpageWebsite: Lewy body disease, Alzheimer’s Australia website

This webpage gives a succinct, plain-English overview of Lewy body disease. It is useful as an introductory document and as a resource to share with family and friends who wish to learn more.

YouTube: Let’s Talk About Lewy Body Disease, Alzheimer’s Australia Vic, 2012

This series of online videos feature Robin Groves, who was diagnosed with Lewy body disease in 2006 and his wife Lis. They discuss how Lewy body disease has affected their lives, including some of the challenges they have faced. The resource is divided into three chapters.

Chapter 1: Robin and Lis

Robin and Lis talk frankly about the condition, and about the changing behaviours Robin experiences.

Chapter 2: A typical case?

Discusses signs and symptoms of the illness.

Chapter 3: Visiting the doctor

Identifies strategies to ensure the doctor or medical professional gets the information they need to provide appropriate ongoing care.

emerging from the shadowsBook:  Emerging from the shadows by Helga Rohra (2016)

‘What’s happening to me?’ Successful translator and linguist Helga Rohra was understandably good with words – that is, until she found herself getting in a muddle when she spoke. She started to forget the way home, even though she could remember her address. Her confusing symptoms increased and Helga was diagnosed with dementia at age 50 – but she hasn’t let herself be labelled with the usual stereotypes. With entertaining vim Helga shows that her life is still as abundant and self-determined as ever, dismantling the negative stereotypes that often surround a dementia diagnosis. She speaks frankly and with humour about her diagnosis and life with young onset Lewy Body Dementia. She explains the changes in her everyday life and the challenges she faces, and shares practical tips that prove it is possible to live well with dementia. Helga also talks about her activism work, which has made hers one of the key voices internationally in dementia advocacy.

teepa snow_lewy body dementia_webDVD: Lewy body dementia : what everyone needs to know by Teepa Snow (2013)

Learn:
– about common LBD symptoms
– how to get a good and complete diagnosis
– about commonly prescribed anti-psychotic medications that can have potentially harmful or even deadly side effects if given to a person suffering from LBD. Know which medications are safer alternatives
– how to adapt your caregiving skills to the needs of a person with LBD
– how to utilize visual and verbal cues to increase understanding and cooperation
– about hands-on skills for LBD
Includes practical information on mid to late stage dementia, sleep problems, hallucinations, practical tips on daily care, activities of daily living, medication issues , and how to talk to doctors about medications – it is a very hands on approach . It also describes how Lewy bodies are more prevalent than previously thought.

a carers guide to Lewy body dementiaBook: A caregiver’s guide to lewy body dementia by Helen Buell Whitworth, James Whitworth  (2010)

Although Lewy Body Dementia is the second leading cause of degenerative dementia in the elderly, it is not well known or understood and is often confused with Alzheimer’ Disease or Parkinson’s. A Caregivers Guide to Lewy Body Dementia is the first book to present a thorough picture of what Lewy Body Dementia really is.
A Caregivers Guide to Lewy Body Dementia is written in everyday language, and is filled with personal examples that connect to the readers’ own experiences. It includes quick fact and caregiving tips for easy reference, a comprehensive resource guide, and a glossary of terms and acronyms.

This is the ideal resource for caregivers, family members, and friends of individuals seeking to understand Lewy Body Dementia.

Dignifying Dementia a caregivers struggleBook: Dignifying dementia: a caregiver’s struggle by Elizabeth Tierney (2011)

A powerful, beautifully-written account of the author’s nine-year journey to care for her husband, who has Lewy Body Dementia. Elizabeth Tierney’s book is moving, harrowing, fascinating and instructive. It is also the story of one woman’s determination to honor her husband’s humanity and how she succeeded against all odds – a triumphant love story.

Helpsheets: Lewy body disease helpsheets, Alzheimer’s Australia

Alzheimer’s Australia has produced a collection of helpsheets about Lewy body disease, covering different aspects of this disease and targeted to different audiences.

LBDA websiteWebsite: Lewy Body Dementia Association, Inc.

This American association is specifically devoted to Lewy Body Dementia and may include useful information for people with Lewy body dementia, their families and carers.

living with lewy body dementiaBook: Living with Lewy Body Dementia : one caregiver’s personal, in-depth experience by Judy Towne Jennings  (2014)

If you’re struggling to care for someone with Lewy Body Dementia, or any Parkinson related disease, and you are looking for some professional help in dealing with the many difficult or awkward situations that arise, then this book is for you. Here you will find not only hundreds of workable ideas on how to maintain and improve the quality of life but also a vast resource of information on what to expect of this unusual disease as it takes its course.

The book is informative: Certainly it provides “meat and potatoes” suggestions for any caregiver, but it is much more than that. Anyone choosing to read this book will have a better understanding of the role of a caregiver, and how we have many positive moments sandwiched among the more challenging. It is a faith-based self help book. I expected God to show up every day and thankfully He always did. (the author)

Graphic Novel: Dad’s Not All There Any More : A Comic About Dementia by Alex Demetris (2015)

dad's not all there anymor“Louie what?” John’s dad, Pete, was already diagnosed with Parkinson’s disease when he began to have some very strange experiences, not least of which was the little red-haired girl who followed him around the house. Eventually diagnosed with Lewy Body Dementia (LBD), his hallucinations and other symptoms became more frequent and intense, and Pete moved into a care home. Based on his family’s experience of his father’s LBD, Alex Demetris’ comic explores with tenderness and humour one of the most common yet often unheard of types of dementia; what it is, its symptoms, living in a care home and the impact on people living with the condition and their families.

activities for the family caregiver LBDBook: Activities for the Family Caregiver : Lewy Body Dementia: How to Engage, How to Live by Scott Silknitter,Robert Brennan, and Linda Redhead (2015)

From the groundbreaking series written specifically for family caregivers, “Activities for the Family Caregiver – Lewy Body Dementia: How to Engage / How to Live” offers information and insight to enhance quality of life through improved social interactions as well as activities of daily living tips, safety and general caregiver information. Learn new communications and activities strategies to improve time spent with your loved one. Gain new insight as you learn the “how to’s,” “why’s,” and techniques of activities – daily living and leisure.

dementia with lewy bodiesBook: Dementia with Lewy bodies and Parkinson’s disease dementia  /  edited by John O’Brien, Ian McKeith, David Ames, Edmond Chiu  (2006)

Filling a noticeable gap in the market for a new text solely focused on Dementia with Lewy Bodies, this book discusses cutting-edge topics covering the condition from diagnosis to management, as well as what is known about the neurobiological changes involved.   With huge progress having been made over the last decade in terms of the disorder’s recognition as a common cause of cognitive impairment, its clinical features, its underlying neurobiology, investigative changes, and management, this is undoubtedly a much-needed work in what is an important and rapidly progressing field.  Written by leading figures in dementia research, this clearly presented, modern text is equally accessible to clinicians such as old-age psychiatrists, geriatricians and neurologists, as well as allied health professionals with a particular interest in the area.

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 dementia publications

This post identifies some recent publications on dementia. These books are all available from the library – if you can’t make it to our Hawthorn location we encourage you to call us on 03 9815 7800 and we can organise to send books to you. Remember, we do need you to be an Alzheimer’s Australia Vic member to provide this service.

Book: Where the Light Gets in : Losing My Mother Only to Find Her Again, Kimberly Williams-Paisley, Foreword by Michael J Fox, 2016

where the light gets inMany know Kimberly Williams-Paisley as the bride in the popular Steve Martin remakes of the”Father of the Bride”movies, the calculating Peggy Kenter on”Nashville,” or the wife of country music artist, Brad Paisley. But behind the scenes, Kim’s mother, Linda, was diagnosed with a rare form of dementia that slowly took away her ability to talk, write and eventually recognize people in her own family. “Where the Light Gets In” tells the full story of Linda’s illness called primary progressive aphasia from her early-onset diagnosis at the age of 62 through the present day. Kim draws a candid picture of the ways her family reacted for better and worse, and how she, her father and two siblings educated themselves, tried to let go of shame and secrecy, made mistakes, and found unexpected humour and grace. Ultimately the bonds of family were strengthened, and Kim learned ways to love and accept the woman her mother became. With a moving foreword by actor and advocate Michael J. Fox, “Where the Light Gets In” is a heartwarming tribute to the often fragile yet unbreakable relationships we have with our mothers.”

DVD: Looks like Laury, Sounds like Laury, Pamela Hogan & Connie Shulman, 2015

looks like lauryWhat would you do if you started to disappear? At the age of 45, our friend Laury Sacks, an ebullient actress and the doting mother of two small children, had a reputation as the quickest wit in the room. At the age of 46, she began forgetting words. Soon she could barely speak.

Our film, Looks Like Laury Sounds Like Laury, captures one year in the long, but short journey of frontotemporal dementia, a little-understood disease that strikes people in the prime of life.

But back to Laury. She lived on the Upper Westside in Manhattan with her husband, Eric, and their two young children. She had been an actress/writer for many years prior to having kids, and then devoted her time to being a mom and writing a memoir about her unconventional childhood. But a memoir requires memories, and when gregarious Laury suddenly became quiet, she began to have difficulty accessing hers.

The changes were subtle at first. She asked Pam to meet for coffee one day, but it was surprisingly difficult to engage her in conversation. To the question “What’s going on, am I boring you?” she answered prophetically, “No! I’m just in my head. ” Then she offered a reassuring hug – which wasn’t reassuring at all.

Everyone misread the cues: “We’re not as close as we used to be;” “She must be mad at me;” “Maybe she’s depressed.” As Laury’s friend Nelsie said, “I don’t think it ever occurred to us she couldn’t access language, that she was trapped in her brain and couldn’t access it.”

But Laury was an actress, and she was acting the hell out of her new part – a woman disappearing.

The film came about when Connie suggested making a film to capture her mysterious new life – and Laury jumped at the idea. It is the profoundly personal portrait of a woman who is facing the unthinkable. As she says straight to camera the first day of filming: “What do I hope for? I hope for – the truth!” Following Laury through her day to day life over the course of a year, conversations begin to resemble the famous Abbott and Costello comedy sketch “Who’s on First?” as Laury gives rapid-fire “Yes!” “No!” “No-Yes!” answers, and confusion reigns. Her husband Eric senses that not only does she grasp the absurdity of the situation, but “at some level she thinks its funny.”

We started filming during a hopeful period, with no idea of what lay ahead.

Laury was always a storyteller and she wanted to tell her last story herself. This is her story.

Book: A caregiver’s guide to dementia : using activities and other strategies to prevent, reduce and manage behavioral symptoms, Laura N. Gitlin, Catherine Verrier Piersol, 2014

a caregiver's guide“Mom has nothing to do—I’m concerned about her quality of life.”
“My husband gets agitated when I need to leave the house—I don’t know what to do.”
“My father keeps asking the same questions over and over.”

These are some of the common challenges encountered by individuals and families who are caring for a parent, spouse or close relative with dementia. This easy-to-use, practical guide is designed to help at-home caregivers navigate these daily challenges. Although there is no cure for dementia or its many behavioral symptoms, there are clear and proven strategies that can be used to enhance the quality of life for persons with dementia—strategies that can make a real difference for their families.
A Caregiver’s Guide to Dementia explores the use of activities and other techniques to prevent, reduce and manage the behavioral symptoms of dementia. Separate sections cover daily activities, effective communication, home safety and difficult behaviors, with explicit strategies to handle] agitation, repetitive questions, acting-out, wandering, restlessness, hoarding, resistance to care, incontinence, destructiveness, sexually and socially inappropriate acts at home and in public, aggressiveness, depression. Worksheets are provided to help caregivers customize the strategies that work best for them.
The strategies featured in this guide have been used by the authors in their research and reflect approaches and techniques that families have found to be most helpful.

Book: Dementia: pathways to hope : spiritual insights and practical advice, Louise Morse, 2015

dementia pathways to hopeTo be diagnosed with dementia is “like being blindfolded and let loose in a maze”. There is no clear treatment to follow, because each case is unique. But once thickets of misunderstanding and misinformation are brushed aside, there are pathways to hope.

“Secular models of support don’t adequately reflect Christian values of compassion, love and service,” explains Louise Morse. “Neither do they describe the power of spiritual support. This is key to the wellbeing of the caregiver, as well as the person with dementia.”

This book is packed with examples of what works, as well as practical advice and accessible medical information.

Louise Morse is a cognitive behavioural therapist and works with a national charity whose clients include people with dementia. Her MA dissertation, based on hundreds of interviews, examined the effects on families of caring for a loved one with dementia.

Fiction: Unbecoming, 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.

 

YouTube: Living with Dementia, Alzheimer’s Australia, 2016

This is also available as a DVD from our library.

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