Conditions we support
Young onset dementia support in Queensland
Dementia changes a lot. Not who they are.
About the condition
Understanding young onset dementia
Young onset dementia is dementia that starts before the age of 65. Many people are diagnosed in their 40s and 50s, and some even earlier. You might also hear it called younger onset or early onset dementia.
Dementia is not one disease. It is a group of symptoms caused by changes in the brain. These changes affect memory, thinking, behaviour and the ability to do everyday things. They get worse over time.
In younger people, the causes are often different from those in older people. They include Alzheimer's disease, frontotemporal dementia, vascular dementia, Lewy body dementia, alcohol related brain damage and Huntington's disease.
The first signs are not always about memory. They can be changes in personality, trouble planning or organising, losing words, getting lost on familiar routes, or struggling at work.
Getting a diagnosis
Getting answers can take a long time.
Many families tell us it took years to get a diagnosis. Early changes are easy to mistake for stress, depression, burnout, menopause or relationship problems. Doctors may not think of dementia in someone so young. If you're noticing changes, start with the GP and ask about a referral to a specialist, such as a neurologist, psychiatrist or geriatrician. Write down what you've noticed and when it started. A diagnosis is hard to hear, but it opens the door to the right support.
Daily life
How it can affect daily life
Young onset dementia touches every part of a busy life.
Work
Many people are still working when changes begin, and work is often where they show first. Some people keep working with changes to their role for a time. Others need to stop sooner than they planned.
Money and the mortgage
Losing an income can put pressure on the mortgage and bills. Check whether the person's super includes income protection or total and permanent disability insurance. The super fund or a financial adviser can explain.
Children
Children may be at school or just starting adult life. Some take on caring jobs without being asked. They need honest information that suits their age, and support of their own.
Partners
A partner can become a carer while still working and running a household. The relationship changes. Partners need breaks and support too.
Identity and friendships
People can lose roles that matter: worker, provider, coach, mate. Friends may drift away. Keeping roles and routines going helps people stay connected and feel like themselves.
Driving
Dementia can affect driving safety. Talk to the doctor early. In Queensland, licence holders must tell the Department of Transport and Main Roads about a long term medical condition that is likely to affect safe driving.
Our support
How we support people living with young onset dementia
Young onset dementia is our main focus. We plan around the whole life: work, family, home and the things that make the person who they are. We also plan ahead, so supports can change as needs change without starting again.
Specialist Support Coordination
A specialist coordinator who knows dementia sets up the NDIS plan, finds the right supports and plans ahead for what comes next.
Dementia Home Care
Help at home with personal care, cooking, cleaning, outings and overnight support, from a small team who gets to know the person.
Community Participation
Keep going to work, the gym, the footy or the club, with a dementia trained worker alongside.
Short Term Accommodation and Respite
A break for the family, in the person's own home or in one of our respite homes. Emergency respite is available.
Supported Independent Living
When home no longer works, a home purpose built for dementia, with 1:1 or 2:1 support. Homes in 10 regions.
Medium Term Accommodation
A safe place to live for up to 90 days while the long term plan is worked out. We source a home in 5 to 7 days.
High Intensity and Complex Care
Support for changed behaviours, wandering and complex health needs, with oversight from our Registered Nurse.
Community Nursing
Registered Nurse led nursing at home in Brisbane, Logan, Ipswich, the Sunshine Coast, the Gold Coast and Toowoomba.
Hospital to Home
If the person is in hospital, our Hospital to Home pathway brings accommodation, support and coordination together in one plan, with one named contact.
After a diagnosis
Four first steps.
Ask the questions.
Ask the specialist what type of dementia it is and what to expect. Take a written list to the appointment.
Sort out legal matters.
While the person can still make their own decisions, look at an enduring power of attorney and an advance health directive. A solicitor can help.
Apply to the NDIS.
The person must be under 65 when they apply. We can help gather the evidence.
Call us.
We'll talk through what would help now and what might help later.
Our team
Our team is trained for this.
Young onset dementia needs people who understand dementia and a younger person's life.
- Every person on our team is dementia trained, in every role.
- Every support worker completes a one week intensive induction before their first shift.
- Every worker is trained on the person's own functional capacity assessment and behaviour support plan before their first shift with them.
- Advanced Maybo training before the first shift, with refresher training every two months.
- Monthly group clinical supervision with a clinical psychologist.
- Our staff are employed by us, not contracted through agencies.
Funding
Young onset dementia and the NDIS
For people with young onset dementia, the NDIS is the main way to fund support. Dementia is a permanent condition, so many people can meet the NDIS disability requirements. What matters most is clear evidence of how dementia affects daily life.
Who can apply to the NDIS
To become an NDIS participant, a person generally needs to:
- be under 65 when they apply
- live in Australia
- be an Australian citizen, a permanent resident or a Protected Special Category Visa holder
- have a permanent impairment that substantially reduces their ability to manage everyday activities.
People who join the NDIS before they turn 65 can stay in the NDIS after 65. We can help gather evidence and guide you through the access process.
Apply as early as you can. It's easier to show the effect on daily life with reports from the treating team, and the person must apply before they turn 65. Once a plan is approved, our Specialist Support Coordination team can help put it to work.
In their words.
“When Mum was diagnosed with early-onset Alzheimer's at 58, we were completely lost. Every provider we called said they 'do dementia too' but it was always an afterthought. Dementia Care Queensland was the first place where the person on the other end of the phone actually understood what we were going through.”
“I'm 54 and I've been living with vascular dementia for two years. I still want to live. I still want to be me. The team at Dementia Care Queensland gets that. They've helped me stay in my own home, keep doing the things I love, and plan for a future I can feel dignified about.”
“We visited a lot of SIL houses before we found Dementia Care Queensland. Most of them felt like nursing homes with nicer curtains. But when we walked into one of these homes, it just felt different. It smelled like someone's house. The layout made sense. There were pictures on the walls. Our son, who has Young Onset Alzheimer's and is 49, walked in and didn't panic. That was the moment we knew.”
Questions about young onset dementia
Related conditions
This page is general information, not medical advice. For advice about your own health or care, talk to your GP or specialist. Last reviewed: October 2026.
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