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.
Somebody 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 : 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.
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: 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
What 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 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.
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.
Forgetting 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