Frontier Research

Frontotemporal dementia refers to a group of disorders caused by progressive degeneration of the frontal and/or temporal lobes of the brain. The majority of FTD cases occur between the age of 45 to 64 and affects both men and women.

The initial symptoms of FTD depend on which part of the brain is first affected.

• The frontal lobes are involved in planning, attention, decision-making, mood and empathy. Damage to this region results in changes to personality and behaviour. This is known as behavioural-variant FTD (bvFTD).
• The temporal lobes are involved in understanding and expressing language. Damage to this region causes the decline of language skills. This is known as primary progressive aphasia (PPA), of which there are three variants: semantic dementia, progressive nonfluent aphasia, and logopenic aphasia.

The rate of decline varies, and can range from 2 to 20 years. As the disease progresses, more symptoms in behaviour, language or movement may appear as more regions of the brain are affected. Unfortunately, there is currently no cure for FTD, nor treatments to slow or stop disease progression. However, there are strategies to manage FTD symptoms that can help to maintain and improve quality of life for the person affected and their loved ones.

For more information about the subtypes of FTD, click here.

If you or a loved one has recently been diagnosed with FTD and would like some advice, click here.

A glossary of common terms surrounding FTD is listed here.

Patients

If you have been diagnosed with frontotemporal dementia you have an important role to play in our research. Here’s what you need to get involved:

1. A diagnosis of behavioural-variant FTD, semantic dementia, progressive non-fluent aphasia, logopenic progressive aphasia, corticobasal syndrome, progressive supranuclear palsy, or Alzheimer’s disease.
2. Fluency in English
3. Living at home
4. Able to communicate and manage basic self-care
5. Able to walk unaided
6. No other major neurological or psychological disorders, such as major stroke, severe brain injury, schizophrenia or bipolar disorder.

We strongly recommend that you have a close family member or friend available to accompany you to the clinic, so that we can gather data from multiple perspectives.

If you, or someone you care for, meet these criteria and would like to participate in our research, ask your specialist (neurologist, geriatrician, or psychiatrist) to send us a referral at frontier@sydney.edu.au.

If you are driving or flying from outside of Sydney, FRONTIER will contribute to your travel expenses up to a maximum of $500 (e.g. petrol, flights, accommodation) so please keep your receipts. If you require local accommodation, we can provide you with a list of recommendations that are all within walking distance from the clinic.

What research participation looks like

Research participation typically involves a two-day visit to the FRONTIER research clinic. You will:

• Have a session with one of our specialist neurologists.
• Complete questionnaires about your medical history and family history.
• Complete tests of your memory, language, and other thinking skills.
• Have an MRI scan of your brain – this is a painless, non-invasive procedure that generates high quality images of your brain.
• Be invited to give a sample of blood as part of our biomarkers research project (optional).

Healthy Volunteers

We are always in need of healthy volunteers to aid us in our research. Participating with us as a volunteer typically involves the activities mentioned above. If you would like to volunteer, please email frontier@sydney.edu.au.

When to refer to us

If you are a GP or specialist and have a patient with a suspected diagnosis of one of the following diseases, please refer to FRONTIER for an expert opinion:

• Frontotemporal dementia (FTD)
  • Behavioural variant FTD (bvFTD)
  • Semantic dementia (SD)
  • Progressive non-fluent aphasia (PNFA)
• Logopenic aphasia (LPA)
• Corticobasal syndrome (CBS)
• Progressive supranuclear palsy, or
• Alzheimer’s Disease

What to include

Please send all referrals via email to frontier@sydney.edu.au or via fax: (02) 8322 4000. When referring, remember to include:

• a description of the person, including the reasons for suspecting one of these diseases.
• copies of any neuropsychological tests the person has completed (e.g. MMSE, MoCA, ACE-III).
• copies of any imaging conducted (MRI, PET), including the radiologist reports.

• a list of general recommendations for a new diagnosis of FTD
• advice on responding to challenging behaviours
• help accessing the NDIS or MyAgedCare
• Further resources on support, education and services available to you.

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The Sydney Language Battery

The Sydney Language Battery (SYDBAT) mobile app was developed to assist clinicians with the diagnosis of primary progressive aphasia and other language disorders. Available now on the iPad app store and coming soon to Android.

ACEmobile

The ACEmobile is an electronic form of the popular Addenbrooke's Cognitive Examination III for Australian and UK versions. Available now on the iPad app store!

Addenbrooke’s Cognitive Examination-III (ACE-III)
The Addenbrooke’s Cognitive Examination is a neuropsychological test used to identify cognitive impairment in dementia. The current version of the test is the ACE-III.

The ACE-III encompasses tests of five cognitive domains: attention, memory, fluency, language, and visuospatial processing. Scores are summed to give a total out of 100, where a score of 88 and above is considered normal cognition, below 83 abnormal, and between 83 to 87 inconclusive.

The Mini-Addenbrooke’s Cognitive Examination (M-ACE) is a shorter version of the ACE-III which is scored out of 30. Cut-off scores of 25/30 and 21/30 are recommended as diagnostic of a dementia syndrome.

The ACE-III protocols are available for download in English for hearing impaired adults, in English for remote administration, and in several different languages.

Sydney Language Battery (SYDBAT)
The Sydney Language Battery is a computer-based language test designed to identify patterns of deficits in expressive and receptive language abilities at the single-word level. It was developed to aid in differentiating between forms of primary progressive aphasia.

The SYDBAT consists of four subtests: Naming, Repetition, Comprehension and Semantic Association. Each subtest contains the same set of 30 nouns and is scored out of 30.

SYDBAT materials, administration and scoring guidelines, and cut-off scores for each subtest are available for download.

Cambridge Behavioural Inventory-Revised (CBI-R)
The Cambridge Behavioural Inventory is an informant-based questionnaire that evaluates the emergence of behavioural symptoms in dementia and other neurodegenerative brain disorders. The current version of the questionnaire is the CBI-R.

The CBI-R consists of 45 items evaluating 10 functional/behavioural domains: memory and orientation, everyday skills, self-care, abnormal behaviour, mood, beliefs, eating habits, sleep, stereotypic and motor behaviours, and motivation.

The CBI-R is completed by a family member or close friend. The frequency of a behaviour over the past month is rated on a scale of 1-4, where a higher score indicates greater frequency.

The CBI-R is available for download here.

Frontotemporal Dementia Rating Scale (FRS)
The Frontotemporal Dementia Rating Scale is an informant-based questionnaire that assesses the severity and rate of progression of frontotemporal dementia based on behavioural changes and functional dependence.

The FRS consists of 30 items evaluating 7 functional/behavioural domains: behaviour, outing and shopping, household chores and telephone, finances, medications, meal preparation and eating, and self-care and mobility. Scores on the FRS are categorised into six stages of disease severity, ranging from ‘very mild’ to ‘profound’ impairment.

The FRS is available for download here.

FRONTIER produces significant research output. Below is a summary of our most recent research papers (updated periodically). For the most up-to-date list of publications, please search for the profiles of any of our researchers individually.