Stories have been told for as long as we have been able to speak. The writing and reading of fiction to facilitate the telling and retelling of stories is an important aspect of being human. The enduring appeal of the novel is demonstrated by the place of libraries and bookshops in the community, the flourishing of book groups and the popularity of creative writing courses.
The body of work weaving the topic of dementia into everyday stories continues to grow.
Take a look at some of the standout titles added in 2017 and consider for your summer reading list.
A full list of fiction held in the Dementia Australia libraries can be found here.
Rain birds / Harriet McKnight (2017)
Alan and Pina have lived contentedly in isolated – and insular – Boney Point for thirty years. Now they are dealing with Alan’s devastating early-onset Alzheimer’s diagnosis. As he is cast adrift in the depths of his own mind, Pina is left to face the consequences alone, until the arrival of a flock of black cockatoos seems to tie him, somehow, to the present.
Nearby, conservation biologist Arianna Brandt is involved in a project trying to reintroduce the threatened glossy black cockatoos into the wilds of Murrungowar National Park. Alone in the haunted bush, and with her birds failing to thrive, Arianna’s personal demons start to overwhelm her and risk undoing everything.
At first, when the two women’s paths cross, they appear at loggerheads but – in many ways – they are invested in the same outcome but for different reasons.
Ultimately, unexpected events will force them both to let go of their pasts and focus on the future.
The gingerbread house / Kate Beaufoy (2017)
Recently-redundant Tess is keen to start work on a novel and needs to make it work. She and her freelance journalist husband Donn desperately need the money and three weeks looking after Donn’s aged mother while the carer takes a break seems like an opportunity to get started. She knows it’ll be tough looking after Eleanor, who has increasingly severe dementia, but she’ll surely find some time for herself, won’t she? Arriving at the isolated country house their daughter Katia has named The Gingerbread House, a tearful Tess begins to realise that she has a far more difficult few weeks ahead than expected. Her mother-in-law is now in need of constant attention and Donn can’t help as he has to stay in town for work. Narrated by Katia – their only child – who prefers not to speak but observes everything, The Gingerbread House is a deeply moving and compassionate story of a family and its tensions and struggles with her grandmother’s dementia, as the reclusive teenager describes the effect it has on everyone in a strangely detached but compassionate way.
Goodbye, vitamin / Rachel Khong (2017)
Ruth is thirty and her life is falling apart: she and her fiancé are moving house, but he’s moving out to live with another woman; her career is going nowhere; and then she learns that her father, a history professor beloved by his students, has Alzheimer’s. At Christmas, her mother begs her to stay on and help. For a year. Goodbye, Vitamin is the wry, beautifully observed story of a woman at a crossroads, as Ruth and her friends attempt to shore up her father’s career; she and her mother obsess over the ambiguous health benefits – in the absence of a cure – of dried jellyfish supplements and vitamin pills; and they all try to forge a new relationship with the brilliant, childlike, irascible man her father has become.
Young adult writing
Before you forget / Julia Lawrinson (2017)
Year Twelve is not off to a good start for Amelia. Art is her world, but her art teacher hates everything she does ; her best friend has stopped talking to her ; her mother and father may as well be living in separate houses; and her father is slowly forgetting everything. Even Amelia.
At times funny, at times heartbreaking, this is an ultimately uplifting story about the delicate fabric of family and friendship, and the painful realisation that not everything can remain the same forever.
For the younger readers
Grandma forgets / Paul Russell and Nicky Johnston. (2017)
A warm, uplifting picture book about a family bound by love as they cope with their grandmother’s dementia. When your grandmother can’t remember your name it should be sad, but maybe it is just an opportunity to tell her more often how much you love her. Over the years, the little girl has built up a treasure trove of memories of time spent with Grandma: sausages for Sunday lunch, driving in her sky-blue car to the beach, climbing her apple trees while she baked a delicious apple pie, and her comforting hugs during wild storms. But now, Grandma can’t remember those memories. She makes up new rules for old games and often hides Dad’s keys. This is a warm, hopeful story about a family who sometimes needs to remind their grandmother a little more often than they used to about how much they care.
Past posts highlighting fiction
Forgetting Foster / Dianne Touchell (2016)
I like you just fine when you’re not around / Ann Garvin (2016)
An Absent Mind / Rill, Eric (2015)
The things we keep / Sally Hepworth (2016)
Inside the O’Briens / Genova, Lisa (2015)
The woman next door / Liz Byrski (2016) 
The Other Place / White, Sharr (2013)
The Father / Florian Zeller, translated by Christopher Hampton (2015)
Wrinkles / Paco Roca , (author, artist) (2015)
Roses in December : A Story of Love and Alzheimer’s / Tom Batiuk and Chuck Ayers (2015)
Alive 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.
When 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.
In 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.
Alice 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.
An 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.
Information 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.
Kate 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.
Offers 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.
Website: Lewy body disease, Alzheimer’s Australia website
Book: Emerging from the shadows by Helga Rohra (2016)
DVD: Lewy body dementia : what everyone needs to know by Teepa Snow (2013)
Book: A caregiver’s guide to lewy body dementia by Helen Buell Whitworth, James Whitworth (2010)
Book: Dignifying dementia: a caregiver’s struggle by Elizabeth Tierney (2011)
Book: Living with Lewy Body Dementia : one caregiver’s personal, in-depth experience by Judy Towne Jennings (2014)
“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.
Book: Activities for the Family Caregiver : Lewy Body Dementia: How to Engage, How to Live by Scott Silknitter,Robert Brennan, and Linda Redhead (2015)
Book: Dementia with Lewy bodies and Parkinson’s disease dementia / edited by John O’Brien, Ian McKeith, David Ames, Edmond Chiu (2006)
Children and teens of all ages impacted by a diagnosis of dementia in their family can now find support and information at our newly launched website, 
When My Grammy Forgets, I Remember: A Child’s Perspective on Dementia provides conversational openings and stimulates discussion between parents and children about compassion and this debilitating disease. Alzheimer’s and other types of dementia not only affect the person living with the disease, but the entire family, including the children. This story explores the difficult reality of dementia and the bittersweet changing relationship between a granddaughter and her grandmother. By including children in the family discussion, parents help them become resilient and empower them to provide comfort for the grandparent or loved one with Alzheimer’s.
My grandpa is getting old but that’s how he is, and I love him. This unique look at old age through the eyes of a young bear is big-hearted, poignant, and beautifully observed. Whether they are boldly traveling the world in an armchair or quietly listening to the song of a hidden bird, the mutual adoration of grandfather and grandson is warmly evident.
Take your child by the hand and enter grandpa’s enchanted world, where everything is possible for a day. Every page bursts forth with magical images that add extra meaning to the poetic story of a child and his grandad.
A young girl and her Nana hold a special bond that blooms in the surroundings of Nana’s magical garden. Then one day, the girl finds many weeds in the garden. She soon discovers that her beloved Nana has Alzheimer’s Disease; an illness that affects an adult brain with tangles that get in the way of thoughts, kind of like how weeds get in the way of flowers. As time passes, the weeds grow thicker and her Nana declines, but the girl accepts the difficult changes with love, and learns to take-over as the magical garden’s caregiver. Extending from the experience of caring for her mother, artist Kathryn Harrison has created this poignant story with rich illustrations to candidly explore dementia diseases, while demonstrating the power of love. It is a journey that will cultivate understanding and touch your heart. After the story, a Question and Answer section about Alzheimer’s Disease and dementia is included.
This heartwarming tale describes what it is like to be close to a grandparent who has been diagnosed with Alzheimer’s Disease. Daniel and his mom spend every summer with his Grandpa at a cottage by the sea. Daniel loves these summer visits: playing baseball, walking on the beach, watching the sunset, and hearing Grandpa’s stories of his fishing boat. As the summer passes, Grandpa begins to change. Daniel learns that since Grandpa has Alzheimer’s disease, he will have trouble remembering all the things that belong to him—his clothes, his words, his memories—and eventually, his own grandson.
Gillian loves to spend time with her Nanny. They enjoy precious moments together, from long walks in the park to drawing beautiful pictures with special colored pencils. Gillian also loves to hear Nanny’s stories about their family. Gillian starts to notice changes in Nanny. She begins to lose interest in activities and becomes easily confused. As nanny’s health declines and dementia sets in, Gillian must accept her Nanny’s condition and find new ways to love and connect with her.
Alex’s grandfather keeps forgetting things, and Alex has overheard his adoptive parents say that they’re going to put granddad in a home. His grandfather begs Alex to save him from that, and it’s a promise Alex is desperate to keep. But Alex once promised his little brother that he would save him, and in the terror of the Bosnian war, he failed. As Alex struggles to protect his grandfather, he uncovers secrets that his family and the village have kept for two generations. Unravelling them will cause grief, but will they save grandfather, and perhaps help Alex come to terms with his own private war?
Jude’s family are crazy, quirky, bizarre …her mum brings her nothing but trouble and her dad thinks he’s Elvis! All she wants is a hassle-free life – but it’s not easy when she’s chasing a trail of broken promises. To add to the complications, Jude’s grandmother has Alzheimer’s disease and her grandfather is very busy caring for her. Things go from bad to worse, but could the floppy-haired boy from school be her knight on shining rollerblades …?
When Carol and her family move to her grandfather’s deserted ranch in order to transfer him to a care home, Carol struggles to cope with the suffocating heat and the effects of her grandfather’s dementia. Bees seem to be following her around, but the drought means this is impossible. She must be imagining things. Yet when her grandfather chooses her as the subject for his stories – tales of a magical healing tree, a lake, and the grandmother she never knew – Carol sees glimmers of something special in what her parents dismiss as Serge’s madness. As she rethinks her roots and what she thought she knew about her family, Carol comes to the realization that Serge’s past is quickly catching up with her present. A stunning coming-of-age story.
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.
Many 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.”
What 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.
“Mom has nothing to do—I’m concerned about her quality of life.”
To 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.