Further reading and resources


  • Our help sheets provide a range of useful information, specifically addressing the needs of people diagnosed with younger onset dementia and their families and carers.
  • The Younger Onset Dementia and the NDIS booklet, checklist and toolkit provide information on understanding the National Disability Insurance Scheme (NDIS) and how to access services and support.
  • On 19 March 2013, people living with younger onset dementia and their carers came together at the Dementia Australia National Summit, Younger Onset Dementia: A New Horizon? to identify priorities to improve care and support for individuals with younger onset dementia. Find out more about the 2013 summit here. Younger onset dementia: A new horizon? (2013).
  • This is a collection of very personal stories containing insights into living with younger onset dementia. In our own words (2009) (PDF, 365 KB).
  • Understanding Younger Onset Dementia is a practice- and evidence-based booklet summarising the neuropathology and characteristics of the different dementias occurring in younger adults under 65 years of age. This booklet provides information of assistance to health professionals and others on the different types of dementia diagnosed in younger people and explains many of the characteristics of the associated changes that occur with younger onset dementias. Understanding younger onset dementia (2008) (PDF, 808 KB).
  • This study explores the main differences between the impact of dementia on younger people and older people and the resultant unique needs of people with younger onset dementia. Exploring the needs of younger people with dementia in Australia (2007) (PDF, 760 KB).
  • This collection of case studies provides some insights into living with younger onset dementia. The Long and Lonely Road: Insights into living with younger onset dementia (2003) (PDF, 364 KB).

Websites and links


  • An unexpected journey : Living with Alzheimer's disease [Video], a presentation by Philip Alderton diagnosed with Alzheimer's disease at the age of 61 / Alzheimer's Association (S.A.) Inc. -- Glenside, SA: Alzheimer's Association South Australia, 1998.
  • Early onset memory loss: A conversation with Letty Tennis [Video], Joseph & Kathleen Bryan Alzheimer's Disease Research Centre
  • My challenge with Alzheimer's disease [Video], South Melbourne, Vic. Educational Media Australia, 1996. 


  • Alzheimer's Association USA Early onset dementia: A national challenge, a future crisisChicago, IL, Alzheimer's Association, 2006.
  • Alzheimer's Association Australia The young mind: Issues in relation to young people and dementia, Sydney, NSW: Alzheimer's Association Australia, 1994.
  • Baldwin, Robert and Michelle Murray (eds) Younger people with dementia: A multidisciplinary approach, London, UK: Martin Dunitz, 2003.
  • Boden, Christine, Who will I be when I die? HarperCollins, 1998.
  • Bryden, Christine, Dancing with dementia, Jessica Kingsley, 2005.
  • Cox, Sylvia; Keady, John. Younger people with dementia: planning, practice and development,Jessica Kingsley, 1999.
  • Cox, Sylvia; McLennan, Jane M, A guide to early onset Dementia, Stirling, Scotland: Dementia Services Development Centre, 1994.
  • DeBaggio, Thomas, Losing my mind : An intimate look at life with Alzheimer's, New York, NY: Free Press, 2002.
  • Imperial College of Science and Medicine, Young onset dementia : epidemiology, clinical symptoms, family burden, support and outcome, North Thames: NHS Executive, 1998.
  • Radin, Lisa & Gary Radin, What If it's Not Alzheimer's? A Caregivers Guide to Dementia, Prometheus Books, 2003.
  • Valenta, Tom. Remember Me, Mrs V?, Hill of Content Publishing Co Pty Ltd, 2007.
  • The carer experience: Information and ideas for carers of people with dementia, Australian Government Publishing Service, ACT.


  • HACC Service Models for People with Younger Onset Dementia & People with Dementia and Behaviours of Concern: Issues for Aboriginal and Torres Strait Islander People and People from Culturally and Linguistically Diverse Backgrounds - Final Report, February 2008
  • Appropriate HACC Service Models for People with Younger Onset Dementia & People with Dementia and Behaviours of Concern - Final Report, February 2007

Journal articles

  • Challenges and charms: Supporting younger people with dementia in Oxfordshire, Signpost: to older people and mental health matters, Vol. 8(1) June 2003, p.5
  • Course and causes of suspected dementia in young adults: A longitudinal study, Panegyres, Peter K.; Frenchman, Kate. -- Thousand Oaks, CA: Sage. American journal of Alzheimer's disease & other dementias, Vol. 22(1) Feb/Mar 2007, p 48
  • Developing better services for young onset dementia, Journal of Dementia Care, Vol. 12(1). Jan/Feb 2004, p.16
  • Dream catcher: A native American meditation practice, Francis, Ryan; DeVoid, Nicole; Richeson, Nancy E. Activities Directors’ Quarterly, Vol. 8(3) Summer 2007 p. 42-46
  • Early-onset Alzheimer's disease: When is genetic testing appropriate?, Alzheimer disease and associated disorders, Vol. 18(2) Apr/Jun 2004 p.65-67
  • Early-Onset Alzheimer Disease in an Italian Family With Presenilin-1 Double Mutation E318G and G394V, Batelli, Sara [et al]. Alzheimer Disease & Associated Disorders. 22(2): Apr/Jun 2008, p.184-187.
  • Evaluation of an early onset dementia service, Journal of Dementia Care , Vol. 12(1) Jan/Feb 2004 p. 35
  • Integrated care pathways for young onset dementia, Journal of Dementia Care, Vol. 12(2) Mar/Apr 2004, p.29
  • Living a quality life with dementia, Dyck, Phyllis. Alzheimer’s Care Today, Vol.8(4) Oct-Dec 2007 p. 301-303
  • Providing person-centred care for younger people with dementia, Journal of Dementia Care, Vol. 12(1) Jan/Feb 2004, p.18
  • What users and carers think of a service for younger people, Journal of Dementia Care, Vol. 12(1) Jan/Feb 2004, p.38
  • Younger people with dementia: The challenge, Signpost : to older people and mental health matters, Vol. 8(1) Jun 2003, p.12