Younger onset dementia



In 2018, there is an estimated 26,443 people with younger onset dementia in Australia, expected to rise to 29,375 people by 2025 and 42,252 people by 2056

Younger onset dementia describes any form of dementia that has an onset of symptoms before age 65. Dementia can develop at any age, but a lack of awareness and understanding, even among health professionals, means that people with younger onset dementia are often misdiagnosed and face even longer delays in getting a diagnosis of dementia.

This post looks at some recent resources around younger onset dementia as well as revisiting some older favourites.

Dementia Australia help sheets 

 Prescription for life (2016)


The Lovell Foundation has teamed up with Edith Cowan University (ECU) and not-for-profit aged care and retirement living providers Bethanie and Mercy Health, to develop an  innovative educational toolkit to support carers of people living with Younger Onset Dementia (YOD).

The e-flipbook incorporates pre- and post-knowledge tests, which will allow anyone who completes the book to be credited with professional development.

Download the free E-Resource


somebodyIusedtoKnowSomebody I Used to Know  /   Wendy Mitchell and Anna Wharton  (2018)

When she was diagnosed with dementia at the age of fifty-eight, Wendy Mitchell was confronted with the most profound questions about life and identity. All at once, she had to say goodbye to the woman she used to be. Her demanding career in the NHS, her ability to drive, cook and run – the various shades of her independence – were suddenly gone.

Philosophical, profoundly moving, insightful and ultimately full of hope, Somebody I Used to Know is both a heart-rending tribute to the woman Wendy once was, and a brave affirmation of the woman dementia has seen her become.


young onset dementia_ 2018Young onset dementia : a guide to recognition, diagnosis, and supporting individuals with dementia and their families  /  Hilda Hayo, Alison Ward, and Jacqueline Parkes (2018)

The book explores the experiences of people living with a diagnosis of young onset dementia through detailed case studies, and gives learning points to implement in practice for the better provision of appropriate support and care. It explains the need for adapting services which are often designed for older people, and how the complicated diagnostic process can lead to misdiagnosis among younger people. Key issues are considered, including at-risk groups, work and dealing with potential loss of employment, changes in personal and family relationships, readjusting life expectations and plans, and social isolation.


ndis yod

Supporting people with younger onset dementia in the National Disability Insurance Scheme (NDIS) / Dementia Australia (2017)

The National Disability Insurance Scheme (NDIS) is the new way supports will be provided to eligible Australians with a disability or disease such as younger onset dementia.

The purpose of the NDIS is to provide people with greater choice, individualised support and the flexibility to manage these supports.

People living with younger onset dementia are now better equipped to understand and navigate the NDIS through the release of the NDIS Toolkit for People Living with Younger Onset Dementia and their Carers 


before I forget_lge.jpgBefore I Forget: How I Survived a Diagnosis of Younger-Onset Dementia at 46  /  Christine Bryden  (2015)

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 unusually slow progress of her condition puts Christine in a unique position to describe the lived experience of dementia, a condition affecting tens of millions of people worldwide. In this revealing memoir, she looks back on her life in an effort to understand how her brain – once her greatest asset, now her greatest challenge – works now. She shares what it’s like to start grasping for words that used to come easily. To be exhausted from visiting a new place. To suddenly realise you don’t remember how to drive. To challenge, every day, the stereotype of the ’empty shell’. Brave and inspiring, this is Christine’s legacy for people with dementia and those who care about them.


Dementia Australia Quality Dementia Care Series

Quality Dementia Care 5 (2015)
Younger onset dementia: a practical guide
Quality Dementia Care 4 (2013)
Understanding younger onset dementia 


what-the-hell-happened-to-my-brainWhat the Hell Happened to My Brain? : Living beyond dementia  /  By Kate Swaffer  (2016)

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. Never shying away from difficult issues, she tackles head-on stigma, inadequacies in care and support, and the media’s role in perpetuating myths about dementia, suggesting ways in which we can include and empower people with the diagnosis. She also reflects on the ways in which her writing and dementia advocacy work have taken her on a process of self-discovery and enabled her to develop a new and meaningful personal identity. Kate’s powerful words will challenge misconceptions about dementia, and open our eyes to new ways of supporting people with the diagnosis.


rain birdsRain 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.

beforeyouforgetBefore 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.



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.

For more resources see our 2013 post on younger onset dementia


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.

Dementia information sites, social media and apps from Alzheimer’s Australia

Alzheimer’s Australia provides a range of websites that specialise in different aspects of dementia or dementia-related issues. This post has collected all our information sources in a central location for your convenience.

Website: Engage Enable Empower, Alzheimer’s Australia


This website is for people living with dementia

It is possible to live a good quality life with dementia. It is surprising how small changes to lifestyle can lead to better health and well being!

Website: You are not alone: online dementia support and counselling, Alzheimer’s Australia VIC

helpingwdementiawebsite2Alzheimer’s Australia Vic’s online dementia support for people living with dementia, their families and carers

If you or a loved one has dementia and you need information, counselling, support and to connect with others in your situation then this website can help you.

Through this website you can:

  • arrange free online counselling (email or videoconference)
  • learn about dementia
  • connect with others in the same situation as you
  • discover where and how to get help

At Alzheimer’s Australia Vic we know that dementia can affect every area of life for you and your loved ones and that it can be difficult to know what to do. We have staff ready to help. So click, explore and connect to find a better way to live with dementia.

App: Dementia-friendly home, Alzheimer’s Australia Vic

appdemfriendlyThe Dementia-Friendly Home App in now available. Using interactive 3D game technology Unreal Engine, the tablet app provides carers with ideas to make their home more accessible for people living with dementia.

With 70 per cent of people with dementia living in the community, the app enables the home to be made more dementia-friendly. This can allow the person to stay in their own home, enjoy their regular lifestyle activities and remain engaged with their community for longer.

The Dementia-Friendly Home App is now available for iPad from the App Store and Android tablets from the Google Play Store for AU$2.99.

Website: Dementia Research Foundation, Alzheimer’s Australia

dementiaresearchfoundationThe Alzheimer’s Australia Dementia Research Foundation is the research arm of Alzheimer’s Australia and funds talented new and early career Australian dementia researchers. It has information on the latest research on dementia – including studies looking for participants. Those wanting funding for studies can find out more about research grants on offer.

Website: Is It Dementia, Alzheimer’s Australia SA

is_it_dementiaThis educational site includes information relevant to a range of different industries to support identification of possible dementia-related behaviours and assisting people who may have dementia.

Industries covered include: Public Transport; Emergency Services; Retail; Fire; Banking; Correctional Services; Community.

Website: Start2Talk, Alzheimer’s Australia

start2talk_webThis site provides advice on how to plan for the future. It includes advice on planning for different stages of dementia, estate planning, powers of attorney, information for healthcare professionals on how to assist patients with this planning, finances and mechanisms to review plans as things progress.

Website: Dementia Enabling Environments, Alzheimer’s Australia WA

dementia_enabling_environmentsDeveloping an enabling environment for a person living with dementia can make a significant difference to independence, quality of life and wellbeing.

A well designed garden, or an interior planned with cognitive impairment in mind can provide essential prompts, accessibility and reduce risks to support a person with dementia to maintain abilities and take part in meaningful engagement. A poorly designed environment can be at best confusing and disorienting, and at worst disabling and even dangerous for those with dementia.

This Virtual Information Centre provides practical tips, guides and resources to help make the places in which we live more dementia enabling: from simple modifications that anybody can make to their home, to landscaping suggestions and architectural design for dementia care environments.

Website: Detect Early – A resource for healthcare professionals, Alzheimer’s Australia

detectearly1Healthcare professionals – whether in the community or in specialist care settings – are crucial in the early detection of dementia, helping to facilitate early intervention and better patient outcomes.

This site provides a wide range of resources and tools to help detect and manage dementia at the early stages.

For GPs, there’s the GPCOG, a screening tool specially designed for use in general practice,1 as well as educational resources targeted at community healthcare.

For pharmacists, there are tailored educational resources to assist with early intervention, as well as patient-focused materials in our Managing Dementia section.

By detecting dementia early, we can assist people with dementia – and their carers – to plan ahead and make crucial decisions about the future.

Website: Younger Onset Dementia forum: Talk Dementia, Alzheimer’s Australia

talk_dementia_YOD_webThis forum provides a place where younger people with dementia, their families, carers and friends can gather and share information. It provides a place to share your stories, connect with others in a similar situation, ask questions and share information.

Website: Your Brain Matters, Alzheimer’s Australia

YBMwebsite3Research shows you can reduce your risk of developing dementia through Five Simple Steps to maximise brain health. Your Brain Matters™ is Alzheimer’s Australia’s evidence-based dementia risk reduction program. You will learn about the five simple steps to maximise your brain health and get tips on living a brain healthy life to potentially reduce your risk of developing dementia.

Website: Dementia Daily, Alzheimer’s Australia NSW

dementiadaily2 Dementia Daily has up to date research and news, videos for adults and kids on dementia, connects people to online dementia communities and blogs, Help Sheets and more.

Video resources: Alzheimer’s Australia YouTube channel

Video resources: Alzheimer’s Australia Vic YouTube channel

Social Media: Alzheimer’s Australia VIC Facebook page


Social Media: Alzheimer’s Australia Vic Twitter


Website:, Alzheimer’s Australia

fightdementiawebsiteOur organisational website includes a range of state-specific and national information about dementia-related events, education opportunities, publications and news. Find out about the services available in each Australian state or territory as well as how you can access them. Browse our extensive collection of help sheets to find out more about dementia, watch videos or read a publication. This rich website caters to a range of information needs. Materials such as help sheets are also frequently available in languages other than English.

App: Brainy app, Alzheimer’s Australia

brainyappBrainyApp was developed in 2011 by Alzheimer’s Australia in partnership with Bupa Health Foundation to raise awareness of the risk factors for Alzheimer’s disease and other types of dementia, and to help you be brain healthy.

There are more than 353,800 Australians currently living with dementia, with this number set to increase to 900,000 by 2010.

There is something you can do to reduce your risk. Scientific evidence tells us that certain lifestyle and health behaviours, particularly around midlife, are associated with reduced risk of developing dementia in late life. So, look after your brain health to reduce your risk of dementia. It’s never too early or late to start, as brain health can be improved and protected at any age.

BrainyApp is available internationally for Apple and Android devices for FREE. You can download BrainyApp from the Apple and Google app stores.

Or you can use BrainyApp on your computer, at

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


Richard Taylor – Collected works

Richard Taylor, a psychologist and person with younger onset dementia was a persuasive and passionate advocate for living well with dementia. Richard generously shared his personal experience of dementia in a range of ways – books, articles, presentations and DVDs. On July 25, 2015 Richard passed away.

Richard was a founding member of Dementia Alliance International. Another founding member of Dementia Alliance International, friend of Richard Taylor and Australian dementia advocate, Kate Swaffer, has written a beautiful and moving tribute to Richard.

Our post today focuses on Richard’s body of work – one that does not shy away from how our community can and must be more dementia-friendly and view people with dementia as just that—whole and real people.

alzheimers_from_the_inside_out_webBook: Alzheimer’s from the inside out by Richard Taylor, 2007

Thoughtful and self-reflective, this collection of illuminating essays offers a rare glimpse into the world of individuals living with Alzheimer’s disease. Diagnosed at age 58, psychologist Richard Taylor shares a provocative and courageous account of his slow transformation and deterioration, and of the growing divide between his reality and the reality of others.

With poignant clarity, candor; and humor, Taylor addresses the complexity and emotions surrounding issues such as the loss of independence and personhood, unwanted personality shifts, the struggle to communicate, changing relationships with loved ones and friends, continuous declines in ability to perform familiar tasks, and never-ending uncertainty about the future.

Article: Waiting for Godot, while living with a diagnosis of dementia, probably of the Alzheimer’s type, Richard P. Taylor, Activities Directors’ Quarterly, Vol. 9, no. 1 Winter 2008 p. 14-16

“Yesterday someone asked me if I could/would write my own care plan. A plan of care that I believe would meet my needs today! Of course I first googled “plan of care Alzheimer’s” to discover the elements common to plan of care for someone in the early stages of the disease…”

Note: should you be interested in this article please request it through our handy form.

live outside the stigma DVD_webDVD: Live outside the stigma by Richard Taylor, 2011

These are the thoughts I so wish I had access to just after I was diagnosed. It took lots of living to work out and work through these conclusions concerning the myths and stigmas that automatically come with the words “Richard you have Dementia, probably of this or that type.”  These are the words I wish someone far wiser and more experienced than I had spoken to me shortly after I was diagnosed. — Richard Taylor

Article: Measuring “the rubs” of my quality of life, Richard Taylor, Alzheimer’s Care Today, Vol.8, Issue 4, October-December 2007 p. 292-293

“How happy am I? What is the quality of my life? High or low, good or bad, poor or rich? Am I, Can I ever be really happy?…”

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be_with_me_today_webDVD: “Be with me today.” A challenge to the Alzheimer’s outsider by Richard Taylor, 2009

Richard Taylor was diagnosed with dementia, probably of the Alzheimer’s type, when he was 58 years old. Now 66, Richard speaks to the public about living with the disease and sends out a challenge to the Alzheimer’s outsider. This is the first DVD in a series of Richard’s “TODAYs.” Join Richard as he speaks from his heart, urging all of us to recognize that “THERE IS A PERSON IN THERE.” It is a remarkable documentation of his presentation to aging services professionals, urging them to embrace the culture change philosophy of person-centered care. For anyone who knows, interacts with, works with, or provides services to people with dementia.

Article: Who actually cares about respite care? People who attend it the most – and are consulted the least, Richard Taylor, Activities Directors’ Quarterly, Vol. 8, no. 3 Summer 2007 p. 27-28

“Three cheers for each and every person who works hard in his or her country, state, and community for funding of respite care! It provides a necessary and useful pause for caregivers.

Now, what about the person who uses the service? What about the quality of the service?…”

Note: should you be interested in this article please request it through our handy form.

100answers20questions6pers_webDVD: 20 questions 100 answers 6 perspectives hosted by journalist Julie Anderson, this program features Judy Berry, Mona Johnson, G. Allen Power, MD, Richard Taylor, PhD, Sarah Rowan, PhD, and Bill Thomas, MD, 2012.

The topics include:

•Maintaining a respect for the personhood of each person
•Ways to help persons with dementia to continue to live purposefully
•Recognizing differences in forms of dementia
•Medications and behavioral concerns
•End-of-life care
Everyone will be informed, encouraged, and challenged by these well-rounded insights.

Hosted by journalist Julie Anderson, this program features Judy Berry, Mona Johnson, G. Allen Power, MD, Richard Taylor, PhD, Sarah Rowan, PhD, and Bill Thomas, MD.

Here is a list of questions:

1.What is dementia?
2.Are all dementia the same?
3.What is Alzheimer’s disease then?
4.How do care partners approach a person with dementia in relation to types of dementia?
5.We have heard these words; caregiver and care partner. What do they mean?
6.How should a doctor tell you about a diagnosis, especially a terminal diagnosis of Alzheimer’s disease and other related dementia?
7.What is the best way for a physician to present a diagnosis?
8.How would you like the diagnosis relayed to you as a patient or as family member?
9.What role should you take in planning treatment?
10.What criteria would families/professionals use to decide which drug to use?
11.Is there a need for someone with dementia to enroll in clinical trial?
12.Why do people resist accepting a diagnosis?
13.What is the importance for accepting dementia diagnosis?
14.Common phrase, “Alzheimer’s is the long goodbye.” “People with Alzheimer’s disease are fading away.” Is this a stigma? Are people with dementia really fading away?
15.How can someone living with dementia have a sense of purpose?
16.When dementia strikes in the family, what are some of the topics to discuss about dementia diagnosis at the family dinner table?
17.What about hope?
18.How can care partners understand what its like to live with the symptoms of dementia?
19.what are best practices for care partners, professionals and people with dementia?
20.In the life of a person with dementia today what is the role of reminiscing?
21.How can care partners minimize stress?
22.In reality, when should a person with dementia move to assisted living community?
23.It is a human moral responsibility to look out for your neighbor; to have each other’s back. In this context, how should society, governments and families understand and respond to dementia?
We believe that this video is both informative and helpful to you in answering some of the questions you might have. Remember, the answers from each individual in this video are personal opinions.  The video is designed to give you information from various points of view so you can make informed decision as per your situation. Keep in mind that if you have met one person with dementia, you have only met one person with dementia.

living w dementia R Taylor DVD_webDVD: Living with dementia: To change your mind about people whose minds have changed by Richard Taylor & G. Allen Power, 2011

In the first of three parts, Dr. Power makes the case for a paradigm shift needed in the established model of institutional long-term care. Viewers see documented evidence of the negative outcomes that result from traditional care, including the dangerous practice of “medicating away” the predictably negative reactions that emerge in response to standard care practices and attitudes. In describing a new vision of care, Dr. Power describes how to


  • Redefine the disease to better understand those experiencing it
  • Stop making people with dementia look and act like we do
  • Recast “problem behaviors” as mechanisms for coping and communicating
  • Find new ways to make normal life experiences accessible to people with dementia
  • Create more opportunities for people to feel connected and find meaning day to day
  • Decrease suffering and increase satisfaction using a new “experiential” model of dementia care

In part two, Dr. Taylor, a former psychologist and educator, articulates the needs, fears, and all-too-common negative experiences of a person diagnosed with dementia. He speaks from the heart on behalf of all those who are unable to communicate for themselves and, at the same time, speaks as one unique individual asking to be respected, supported and, most of all, seen and heard. With surprising candor and wit, he presents moving personal stories and sage advice that provide new insight about the experience of the disease to formal and informal caregivers as well as LTC managers and administrators.

Together, in part three, these two inspiring speakers respond to common questions and concerns, including

  • How to communicate a person’s preferences to care staff
  • Whether asking for opinions and responses from people with dementia is confusing for them
  • Ways to have better long-distance interchanges with a loved one by phone
  • Whether better care practices can be taught or are essentially innate
  • And much more

This valuable training tool helps to raise the awareness of anyone working in long-term care settings to the remaining potential for people with dementia to lead satisfying and fulfilling lives — with appropriate supports — despite their losses.

* G Allen Power is the author of      “Dementia beyond drugs : changing the culture of care” and he discusses parts of his book as well as referring to Tom Kitwood and the Eden principle

Younger Onset Dementia

Younger Onset Dementia describes any form of dementia that has an onset of symptoms before age 65. It currently affects 24,000 Australians*.  Dementia can develop at any age, but a lack of awareness and understanding, even among health professionals, means that people with younger onset dementia are often misdiagnosed and face even longer delays in getting a diagnosis of dementia.

In our publication Younger Onset Dementia: A New Horizon? (2013) Alzheimer’s Australia make the observation that even with a diagnosis, there are few services designed to provide appropriate care and social support for younger people and their carers. Individuals with younger onset dementia face a unique set of challenges with changing financial circumstances, limited access to appropriate services, new social challenges and often too frequently fundamental changes to their relationships with family and friends**.

I think, dear readers, that one of the nicest things about the internet is that it gives us all the opportunity to share our experiences, thoughts and insights. Today we’ve pulled together resources on Younger Onset Dementia and hope that you find these as useful, thought-provoking and touching as we did.

YouTube short film: The Music in Hugh: A Look at Young Onset Dementia

In this completely gorgeous short documentary, son Max talks about the impact of younger onset dementia on his father, himself and his family.  Max shares his experience with touching candor and very importantly has found a way to reconnect with his father through music. Max’s thoughtful narrative on the importance of seeing his father as a person, not a patient or collection of symptoms is inspiring.

Fiction: Still Alice, L. Genova

Still AliceStill Alice is a fictional account of Alice Howland, 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. She finds herself in the rapidly downward spiral of Alzheimer’s Disease. She is fifty years old. Suddenly she has no classes to teach, no new research to conduct, no invited lectures to give. Ever again. Unable to work, read and, increasingly, take care of herself, Alice struggles to find meaning and purpose in her everyday life as her concept of self gradually slips away. But Alice is a remarkable woman, and her family, yoked by history and DNA and love, discover more about her and about each other, in their quest to keep the Alice they know for as long as possible. 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.

Book cover Coping with Early-onset Dementia Guidebook: Coping with Early-onset Dementia, J. Eckersley

This is a helpful, no-nonsense guide Coping with Early-onset Dementia to confronting, accommodating and planning ahead for younger people with dementia. As well as acknowledging the special challenges facing people with younger onset dementia this guide also emphasises that there is still life to be lived, for both those with dementia and their carers. Topics covered include:

  • types of dementia, including Alzheimer’s disease
  • managing dementia on a day-to-day basis and dealing with common problems
  • obtaining support that is appropriate for younger people with the condition
  • treatments and new drugs in the pipeline
  • dealing with practical issues, such as work, driving and obtaining benefits
  • support for families, carers and children
  • care as the condition progresses – day centres, respite care and residential care
  • the relationship between dementia and genetics
  • complementary therapies
  • further resources

Memoir: Jan’s story : love lost to the long goodbye of Alzheimer’s, B Peterson

JansStoryJan Petersen was vibrant, active, healthy, and just 55 when she was diagnosed with Alzheimer’s. Barry was not even slightly prepared for what happened to her, and how it would impact his life when “forever” suddenly and terrifyingly has an expiration date. Jan’s Story is a very personal memoir on the impact of younger onset dementia.

DVD: Reflections: John & Yolanta : experiencing younger onset dementia

Reflections DVDJohn was an elite air force pilot who was diagnosed with Alzheimer’s disease at 52. In this DVD, John, his wife Yolanta and friend Dave chronicle the impact of John’s diagnosis upon their relationships and lives. Reflections: John & Yolanta: Experiencing Younger Onset Dementia is suitable for the families of people diagnosed with dementia at a younger age, and deals with many of the issues other families in a similar situation may face. The DVD is also relevant for health professions, as it highlights the complexity of life with younger onset dementia, and raises awareness about the particular issues affecting younger people.

Sign up: HOPE – Younger Onset Dementia newsletter, Alzheimer’s Australia

HOPE is Alzheimer’s Australia’s national newsletter for younger people with dementia, their care partners, family and friends, health professionals, care staff and everybody with an interest in younger onset dementia.  Take a look at our website page for HOPE where you can access previous editions and/or sign up for the newsletter by emailing

Other information on Younger Onset Dementia

Younger onset dementia factsheets, Alzheimer’s Australia

Younger onset dementia tip sheets, Alzheimer’s Australia

Younger onset dementia forum, Alzheimer’s Australia

In our own words : younger onset dementia : a collection of very personal stories, Alzheimer’s Australia

The Long and Lonely Road: Insights into living with Younger Onset Dementia, Alzheimer’s Australia

Garry’s Dream, The Lovell Foundation  – The Lovell Foundation and Alzheimer’s Australia Vic have set an objective to promote the development of a quality long term accommodation facility for people diagnosed with Younger Onset Dementia.

Younger Onset Dementia and Me blog, AANSW blog – a place for young people with parents with younger onset dementia to connect with others, to get information and helpful suggestions and a place to be listened to.

When Dementia is in the House website, Dr T Chow and K Nichols  – Dementia resources for parents and teenagers

Younger people with dementia factsheet, Alzheimer’s Society UK

* Australian Institute of Health and Welfare (2012) Dementia in Australia.

** Alzheimer’s Australia (2013) Younger Onset Dementia: A New Horizon?