Conditions we support
Creutzfeldt-Jakob disease support in Queensland
Calm support, without delay.
About the condition
Understanding Creutzfeldt-Jakob disease
CJD is a rare brain condition caused by prions. Prions are proteins that fold into the wrong shape and cause other proteins to do the same. This damages brain cells quickly.
There are three main forms:
- Sporadic CJD is the most common. It happens by chance, with no known cause. It is not caught from anyone.
- Inherited (familial) CJD is caused by a gene change that can be passed down in families.
- Acquired CJD is very rare. A small number of people developed CJD after certain medical treatments in the past, and safety rules have changed to prevent this. Variant CJD, linked to mad cow disease, has not been found in Australia.
CJD usually gets worse over weeks to months. Early signs can include memory loss, confusion, changes in behaviour, vision problems and unsteady walking. Muscle jerks, trouble speaking and swallowing, and the need for full care can follow quickly.
There is no cure. Care focuses on comfort, safety, dignity and time with family.
CJD is not spread through everyday contact. You can't catch it by touching, hugging, sharing meals or giving personal care. Our team uses standard infection control precautions, as we do with everyone. Extra precautions apply to certain medical procedures, such as some surgery on the brain, spine or eyes, so tell every doctor and dentist about the diagnosis. We follow the treating team's infection control advice.
Daily life
How it can affect daily life
With CJD, needs can change from one week to the next.
Rapid change.
Support that was right last week may not be enough this week. Plans need to keep up.
Movement and falls.
Unsteady walking, muscle jerks and stiffness raise the risk of falls.
Seeing and understanding.
Vision problems, confusion and hallucinations can frighten the person.
Eating and swallowing.
Swallowing gets harder, so meals and drinks need care.
Communication.
Speech can become difficult. Calm voices, gentle touch and familiar faces still matter.
The family.
A diagnosis, big decisions and grief can all arrive at once. Families need support too.
Our support
How we support people living with Creutzfeldt-Jakob disease
With CJD, every week counts. We answer referrals the same business day, match a worker within 4 days, source a Medium Term Accommodation home in 5 to 7 days and arrange Supported Independent Living in 7 to 14 days. Where a palliative care team is involved, we work alongside them.
Specialist Support Coordination
A coordinator who moves quickly and keeps everyone in the loop.
Dementia Home Care
Personal care, meals, company and overnight support at home, from a small, consistent team.
High Intensity and Complex Care
Swallowing support, PEG (feeding tube) feeding and 2:1 support, with Registered Nurse oversight, across Queensland.
Community Nursing
Registered Nurse led care at home in Brisbane, Logan, Ipswich, the Sunshine Coast, the Gold Coast and Toowoomba.
Medium Term Accommodation
A home sourced in 5 to 7 days, staffed 1:1 or 2:1.
Supported Independent Living
Homes purpose built for dementia, with 1:1 or 2:1 support.
Short Term Accommodation and Respite
Breaks for family, including emergency respite. If the person is in hospital, our Hospital to Home pathway brings everything together.
Our team
Our team is trained for this.
CJD needs a team that can step in quickly and stay calm.
- Every person on our team is dementia trained, in every role.
- Every worker is trained on the person's own functional capacity assessment and behaviour support plan before their first shift with them.
- Clinical oversight by a Registered Nurse, who leads high intensity supports and community nursing.
Funding
Creutzfeldt-Jakob disease and the NDIS
People living with CJD can apply to the NDIS if they meet the access requirements. Because CJD changes so quickly, apply as early as you can. The hospital team or a support coordinator can help with evidence.
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.
The NDIS funds disability supports, such as help with daily living and Medium Term Accommodation. Medical treatment and specialist palliative care come through the health system.
In their words.
“I've referred to a lot of NDIS providers over the years. Most of them mean well, but dementia is complex, and it shows quickly when a coordinator doesn't really understand it. With Dementia Care Queensland, I refer and I don't worry. Their coordinators understand progression. They understand the family dynamics. And they pick up the phone. That's rarer than it should be.”
“We'd been through three support coordinators before we found Dementia Care Queensland. None of them really understood Dad's condition, they were juggling too many clients, too many diagnoses. Our coordinator here is different. She calls before we even know we need her. She's already thought about what Dad's going to need in six months. That kind of proactive care, we'd never experienced it before.”
“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.”
Questions about Creutzfeldt-Jakob disease
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.
You don't have to do this alone.
Call any time, day or night. Referrals answered the same business day, always within 24 hours.