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.

 

 

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

 

Still Alice

still alice movieIn January 2015 a film version of the book Still Alice by Lisa Genova was released. This film has received critical acclaim and to date, has won multiple awards.

If you’ve read Still Alice or seen the film you already know that it is a story of a psychology professor Alice Howland (played by Julianne Moore) who is diagnosed with early onset Alzheimer’s disease. The story describes her life from early warning signs, through diagnosis and then follows her progress through the onset of symptoms. It eloquently illustrates the impact of Alzheimer’s disease for Alice and for her family.

This post includes articles prompted by the release of the film Still Alice—reviews, commentaries and a podcast. It is not an exhaustive list, but rather a small sampler of the discussions initiated by Still Alice’s cinematic interpretation.

Remember, we have copies of the novel version of Still Alice in the Alzheimer’s Australia VIC library. Here’s a link to a review of the book on this blog – scroll down a bit, the review of Still Alice is lower on the page. You can contact us or come and visit us if you’d like to borrow a copy.

Once the film is released on DVD you will also be able to borrow a copy of the film from our library.

Article: Still Alice is ‘shockingly accurate’ – people living with dementia give their verdict, Tom Seymour, 11 February 2015, The Guardian

Julianne Moore is an Oscar favourite for her portrayal of a woman with dementia in Still Alice. But what do people with the condition think of the film?

megaphonePodcast: A review of the film Still Alice, panel discussion by Alzheimer’s Australia Dementia Research Foundation, Episode 25.

On January 29, Still Alice was released in Australian cinemas, a movie based on fictional character Alice Howland from her dementia diagnosis through to onset of symptoms. Throughout the movie Alice slowly but inevitably loses memory and connection with reality. She gradually loses the ability to follow a conversational thread, the story line of a book, or to recall information she heard just moments before. All common dementia symptoms. Many film critics are raving about Julianne Moore’s portrayal of Alice, and she has already won a Golden Globe award for best actress and is number 1 pick to win a prestigious Oscar. So what do others think of the movie, particularly those who are close to the cause and is the movie sending the right messages about ‘what is dementia?’ While the overall view of the movie is positive, some critics do say the film is overly “pristine” and “shies away from taking risks”, while also not being plausibly representative of the typical experience of dementia in choosing to focus on an “almost perfect … privileged family.” Others ask if it focuses enough on the latter stages, along with the impact placed on families and carers. In this special extended episode of the Dementia News I am pleased to have joining with me, three expert panellists, Dr Siobhan O’Dwyer (Griffith University), Dr Andrew Watt (Florey Institute of Neuroscience and Mental Health) and Jill Brown (Alzheimer’s Australia ACT), to give their views of the movie and discuss just how close to real life it is.

Article: ‘Hollywood’ movie sparks dementia conversation, DPS News

It is expected that a new Hollywood movie, starring a lineup of well known actors, will lead to greater awareness of the ‘enormous’ dementia challenge facing Australia, particularly those experiencing younger onset dementia.

the conversationArticle: Still Alice, and the advocacy for Alzheimer’s in fiction, Matthew Wade, 29 January 2015, The Conversation

Still Alice – starring Julianne Moore – tells the story of Alice Howland, a linguistics professor diagnosed with a form of early-onset Alzheimer’s Disease. Moore has already netted a Golden Globe and is clear favourite for a well-deserved Best Actress Oscar next month.

The novel on which the film is based is one of a clutch of debuts in recent years to explore forms of neurodegenerative disease. So what role does fiction play in our understanding, and acceptance, of dementia?…

 

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.

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.