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ForeFront Frontier research clinic - frontotemporal dementia

Developing treatments for frontotemporal dementia

The ForeFront Frontier research clinic specialises in frontotemporal dementia (FTD) and related diseases. Our clinic is integrated with the Frontier research program where researchers collaborate across disciplines. 

What is Frontotemporal dementia?

Frontotemporal dementia (FTD) is the second most common degenerative disease causing dementia in younger adults.

The age of onset is typically in the 50s or 60s but can be as young as 30. The disease is sometimes called frontotemporal lobar degeneration. It was first described 100 years ago by Arnold Pick and was previously referred to as Pick’s disease.

Damage to brain cells begins in the frontal and/or temporal lobes of the brain. When the initial damage is in the frontal lobe (called behavioural-variant FTD) the main changes are in personality and behaviour. Individuals with damage predominantly in the temporal lobe (either progressive non-fluent aphasia or semantic dementia) lose the ability to speak or understand language.  Over time, as the condition progresses, people with FTD experience both behavioural and language changes.

To learn more about the symptoms, prognosis and diagnosis of frontotemporal dementia, download the Younger Onset Dementia booklet from the Alzheimer's Australia website.

Get involved - sign up for a study

If you have been diagnosed with frontotemporal dementia, or care for someone who has, you have an important role to play in our research. By working with our dedicated team, you can help us develop new treatments for FTD and find out more about this condition and its causes. If you decide to come to our research clinic, you may be involved in one of these innovative projects:

  • apathy in dementia
  • social cognition and memory changes in frontotemporal dementia
  • progression of structural and functional brain changes in frontotemporal dementia
  • metabolic changes in FTD
  • severity rating scales - how FTD symptoms change over time
  • neuropathology in frontotemporal dementia -  cellular changes 
  • clinical, imaging and biological markers for early disease identificaton
  • genetics
  • cognition in motor neurone disease, a condition closely related to frontotemporal dementia
  • the impact of FTD on those living with the condition, their carers and family members
  • developing effective support interventions for carers and families.

What you need to participate:

1. A referral from a neurologist, geriatrician or psychiatrist who suspects a diagnosis of frontotemporal dementia (FTD), including behavioural variant FTD (bvFTD), semantic dementia (SD), progressive non-fluent aphasia (PNFA), logopenic progressive aphasia (LPA), corticobasal syndrome (CBS) or progressive supranuclear palsy (PSP).  We also involve people who have a diagnosis of Alzheimer’s Disease in our research.

2. To be in the relatively early stages of the disease; that is:

  • living at home
  • able to communicate
  • managing basic self-care activities
  • able to walk unaided.

3. Have high-level proficiency in English.

4. Have no other major neurological or psychological disorders such as major stroke, severe brain injury, schizophrenia or bipolar disorder.

To compare patients with FTD to healthy adults, we also need volunteers without FTD to participate in our trials. To get involved, please email frontier@sydney.edu.au.

What to expect at our research studies

If you participate in one of our studies, you may:

  • be interviewed about your medical history, education and occupational background
  • complete cognitive tests on memory, language skills and thinking abilities
  • have your brain scanned via MRI (magnetic resonance imagining), a painless, non-invasive procedure that generates high-quality images of the brain.

Are you caring for someone with frontotemporal dementia?

We have a wealth of information to help families and carers of people with FTD. We share various resources via Facebook and Twitter.

Alzheimer's Australia also offers information, advice and support options for people living with any type of dementia and their families and carers.

We encourage families to contact the Australian Frontotemporal Dementia Association (AFTDA). The association seeks to educate physicians and other health professionals on FTD and raise general public awareness of the condition. It is working towards a disease registry for FTD that will provide more accurate data on its incidence in Australia.

The FTD Toolkit provided by the Eastern Cognitive Disorders Clinic in Melbourne is another valuable resource.

Be part of the next generation of research – Frontier Brain Donor Program

Finding a cure for FTD is contingent on research that examines brain tissue. FTD is a very unique condition. Unlike other neurodegenerative diseases, or illnesses in other parts of the body, the cells in the brain of someone with FTD change in ways that we cannot examine while they’re alive. What’s more, most of what we already know about the causes of FTD is because of research carried out on post-mortem brain tissue. 

For these reasons, we encourage the FTD community to consider donating their brain to the Frontier Brain Donor Program. It is fundamental to advancing our understanding and therefore treatment of FTD. Your gift could benefit many lives in the future.

Email the Frontier Biomarker Donor Coordinator to learn more: frontier.biomarker@sydney.edu.au.