Younger Onset Dementia

• The Younger Onset Dementia Guide by Dementia Australia

  Publication Date: 2025

  The Younger Onset Dementia Guide is for anyone impacted by younger onset dementia. The information in this guide is divided into four parts. Part 1: About dementia and younger onset dementia, Part 2: Supports, services, and advice, Part 3: Support and information for carers and family members., Part 4: Useful tools.
• Younger onset dementia

  Information about younger onset dementia, sometimes called early onset dementia. Also, includes information on: conditions that lead to younger onset dementia; diagnosing younger onset dementia; treatment and management of younger onset dementia; and living with younger onset dementia.
• Planning ahead: Deciding who can speak for you

  Information about how to prepare for the time when a person with dementia will lose their ability to make informed decisions. It explains substitute decision-maker arrangements and provides links to state and territory specific information.
• Talking to someone with dementia

  A guide to ways in which people with dementia say good communication would improve their lives. This resource has been developed by the Dementia Australia Advisory Committee (DAAC). The national representative group made up of people living with dementia.

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  Younger onset dementia

  In this webinar, we are joined by Professor Dennis Velakoulis, discussing the most common forms of dementia that younger people are likely to be diagnosed with, the symptoms and progression of the condition.
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  Younger onset dementia and the caring role

  In this webinar, we are joined by Dr Wendy Kelso, discussing both positive and negative emotions and the importance of well-being within the caring role for someone with younger onset dementia.
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  Younger onset dementia and the NDIS

  In this webinar, we are joined by Dementia Australia expert Joshua Moody, discussing what NDIS is and how it can benefit people who are under the age of 65 years with a diagnosis of younger onset dementia.
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  Hold the Moment Podcast by Dementia Australia

  Hold the Moment is a podcast by people living with dementia. Covering topics on diagnosis, relationships, sleep, exercise and more.

• Somebody I used to know by Wendy Mitchell

  Publication Date: 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.
• Losing Clive to Younger Onset Dementia by Helen Beaumont

  Publication Date: 2008

  Clive 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.
• Young Onset Dementia by Hilda Hayo; Alison Ward; Jacqueline Parkes

  Publication Date: 2018

  Providing key information and insight into the experiences of people living with a diagnosis of young onset dementia, this book will increase the knowledge and skills of health and social care professionals in the early recognition, diagnosis and support of young people with dementia and their families. 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.

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  Helping Children and Adolescents When a Parent has Younger Onset Dementia: A guide for parents, caregivers and professionals

  A 47-page guide to help parents, caregivers and professionals understand and respond to children when a father or mother has younger onset dementia.

• Dementia in Australia: Younger onset and childhood dementia (2025) by AIHW

  Although dementia is a disease more commonly seen in people aged 65 or over, it can occur at any age. This section presents information collated from across the Dementia in Australia report relevant to people with dementia under the age of 65.
• Lived experience perspectives about gaps and barriers in services for those living with and those providing care for people with young-onset dementia in Australia: Findings from the Joint Solutions Project (2025)

  Young-onset dementia (YOD) is a dementia where symptom onset occurs at less than 65 years of age. There has been increased recognition of YOD with improved diagnostic assessments and the introduction of the National Disability Insurance Scheme (NDIS). The Joint Solutions project aimed to evaluate the gaps and barriers along the pathway of care in Australia from a range of stakeholder perspectives to investigate access to services from those who have YOD and those who provide care for them.
  Loi, S. M., Tjokrowijoto, P., D’Cunha, N. M., Cartwright, J., Moylan, N., Cations, M., Stange, D., Withall, A., Atkins, K., Bradley, L., Burton, E., Draper, B., Fitzgerald, A., Goodlet, C., Irish, M., Joseph, T., Kelso, W., Lewis, R., Poisson, V., & Pozzebon, M. (2025). Lived experience perspectives about gaps and barriers in services for those living with, and those providing care, for people with young-onset dementia in Australia: Findings from the Joint Solutions Project. The Australian and New Zealand Journal of Psychiatry, 48674251346681. https://doi.org/10.1177/00048674251346681
• Communication is difficult': Speech, language and communication needs of people with young onset or rarer forms of non-language led dementia (2024)

  This study aimed to explore the experiences and perspectives of people living with young onset or rarer forms of non-language-led dementia and their families, regarding their language and
  communication difficulties and how speech and language therapy could address these needs.
  Volkmer, A., Cross, L., Highton, L., Jackson, C., Smith, C., Brotherhood, E., Harding, E. V., Mummery, C., Rohrer, J., Weil, R., Yong, K., Crutch, S., & Hardy, C. J. D. (2024). 'Communication is difficult': Speech, language and communication needs of people with young onset or rarer forms of non-language led dementia. International journal of language & communication disorders, 10.1111/1460-6984.13018. Advance online publication. https://doi.org/10.1111/1460-6984.13018
• Family carers’ narratives of the financial consequences of young onset dementia (2021)

  ndividuals with young onset dementia and their families face unique challenges, such as disruptions to their life cycle and relationships and a dearth of appropriate supports. Financial consequences have also been noted in the literature yet have not been explored in-depth. The purpose of this research was to qualitatively explore carers’ experiences of financial consequences resulting from the young onset dementia of a family member and how these consequences may be managed. Eight carers (7 women and 1 man) provided a written online narrative about their journey with young onset dementia and any financial consequences experienced, with open-ended prompts to elicit details not yet shared.
  Bayly, M., O’Connell, M. E., Kortzman, A., Peacock, S., Morgan, D. G., & Kirk, A. (2021). Family carers’ narratives of the financial consequences of young onset dementia. Dementia.
• Psychosocial treatment preferences of persons living with young-onset dementia and their partners (2021)

  Persons living with young-onset dementia and their partners often experience elevated emotional distress as they cope with an unexpected progressive illness during an active life stage (typically ages 45–64 years). Despite their heightened emotional distress, psychosocial resources are both limited and lack the specificity to meet the unique needs of both partners. Our aim was to gain an in-depth understanding of the psychosocial treatment preferences of persons with young-onset dementia and their partners—an important first step in developing a tailored intervention.
  Grunberg, V. A., Bannon, S. M., Reichman, M., Popok, P. J., & Vranceanu, A.-M. (2021). Psychosocial treatment preferences of persons living with young-onset dementia and their partners. Dementia.
• The experiences of those affected by parental young onset dementia: A qualitative systematic literature review (2021)

  The aim of this review was to develop understanding of the lived experiences of children of people living with young onset dementia, defined as individuals both under and over the age of 18 years whose parent was diagnosed with dementia before the age of 65 years.
  Cartwright, A. V., Stoner, C. R., Pione, R. D., & Spector, A. (2021). The experiences of those affected by parental young onset dementia: A qualitative systematic literature review. Dementia.
• Creating change: the experiences of women living with young onset dementia (2020)

  The purpose of this paper is to illuminate the experiences of women living with young onset dementia which led them to take up advocacy roles as a result of their experiences. Five women from Canada who were diagnosed with young onset dementia and had then taken on advocacy roles were interviewed. Two main themes emerged– Moving In (the challenges of a diagnosis) and Moving On (into a new life). They described the challenges of a diagnosis as stopping work, being taken seriously, fighting for support, failing to meet requirements for programs and services, and changing relationships with friends.
  Kirstin Broders & Elaine C. Wiersma (2020) Creating change: the experiences of women living with young onset dementia, Disability & Society, Published online: 29 Nov 2020