1.4 Get trustworthy, up-to-date information

Much of the available dementia information focuses on older adults, so it can take some searching to find resources relevant to younger people. Some people prefer to learn everything they can right away, while others prefer to focus only on what they need right now. Whatever your approach, make sure the information comes from reliable, evidence-based and trustworthy sources such as national dementia organisations, hospitals, or universities. This website provides reliable information that we have assessed before including.

Read online materials about dementia

• Dementia Australia has released a comprehensive guide specifically for people with young-onset dementia and their families.
• You can print or read online booklets on the topics of Introduction to Dementia, The Dementia Compass, and Later in the Dementia Journey by the Horizon Health Network in New Brunswick, Canada.
• Explore the pages, links, stories, and resources on this website.

Read books about dementia

• By Us For Us: Young Onset Dementia is a guide written by people living with young-onset dementia, offering practical tips and strategies for common challenges they experience.
• Dementia Australia has a library of books, e-books, and pamphlets written by people with dementia, carers, researchers, and health professionals. You can read some of these online, or they will loan them to you by post. Email [email protected] or call the National Dementia Helpline 1800 100 500.

Participate in a course about dementia

• The University of Tasmania’s Understanding Dementia Massive Open Online Course (MOOC). This course was updated in 2025 and includes content specific to young-onset dementia. It’s open to anyone, including carers, family and friends, and people with dementia. The course is self-paced, has four modules, and can be accessed from anywhere in the world.

Talk to a dementia professional by phone

• If you prefer to ask someone your questions rather than search online, Dementia Australia has a free, 24-hour telephone helpline, 1800 100 500. The helpline advisor can post or email you information if you ask.
• If your queries are about changed behaviours, Dementia Support Australia also offers 24-hour help on 1800 699 799.

Connect with others living with and caring for someone with young-onset dementia

• Many people find strength in connecting with peers who understand what they’re going through. Support or education groups are a good way to learn more about dementia and connect with others who are going through similar experiences. You can ask questions, share ideas, and discuss issues over time. Because young-onset dementia is less common, it can be hard to find people who are “in the same boat,” which can make the experience feel isolating and lonely. You may need to try several groups to find one that is right for you. Many people have told us the friendships and understanding they’ve gained from these groups is invaluable.
• Several groups to explore include:
• Dementia Australia conducts a Living with Younger Onset Dementia program. This is a structured program that covers coping with change, relationships and communication, planning for the future, strategies and support services. It’s delivered in small groups over multiple in-person sessions. Check the Dementia Australia website for availability and registration.
• Lorenzo’s House is a global, virtual organisation that supports the children of people living with younger onset dementia. They run regular online peer support groups.
• Dementia Alliance International runs free online peer support groups and educational webinars for people living with dementia.

There may be local services. For example, in suburban Melbourne, Caladenia runs a monthly in person Younger Onset Dementia Carer Support Group. Your GP may know of other support groups in your area.

Attend an in-person free course

• Short, free residential courses funded by the Australian Government are conducted around Australia. Small groups of people with dementia and their main supporters receive 2-5 days of education, support and fun designed to improve their knowledge, skills and experience of dementia. See here for services providing these courses around the country.

Listen to a podcast about dementia

• The Dementia Dialogue podcast series features people with dementia and their carers talking about their experiences adjusting to and living well with dementia. Check out Season 1: Mapping the Dementia Journey.
• The Hold the Moment podcast shares stories and conversations around living with dementia, especially young-onset dementia.
• In Two Minds explores the complexities of dementia through different perspectives, including lived experience and research, and covers both the realities of care and emerging treatments.
• The ABC’s Series You Can’t Ask That had an episode featuring people with younger onset dementia

Photo: Christin Hume via Unsplash.