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You are not alone

Receiving a diagnosis of Frontotemporal Dementia (FTD) may feel overwhelming and confusing. Whether you are the person living with FTD or you are caring for someone who is, please know: you are not alone, and we are here to help.

Think of this AFTDA (Australia Frontotemporal Dementia Association) website like a roadmap that helps you navigate your way. There are many high quality resources available on our website and please contact us if you have any questions. We are an organisation of volunteers with a strong commitment to doing everything we can to assist you on your journey.

Think of FTD as an “umbrella term.” Just as a physical umbrella covers many people, FTD covers a group of conditions that affect the parts of the brain responsible for our personality, our behaviour, and how we communicate (the frontal and temporal lobes).

While it is a neurodegenerative condition—meaning it does change and progress over time—understanding the “why” behind these changes is the first step in finding the right support and strategies for daily life.

Unlike some other types of dementia, FTD is often called a “younger onset” condition.

FTD is estimated to be the second most common cause of dementia in younger people after young-onset Alzheimer’s disease. The world-wide prevalence of the disease is uncertain but it has been estimated that for every 100,00 people aged 45 to 64, between 15 to 22 will develop FTD (Knopman 2011).

The Timing: It most commonly appears when people are in their 40s, 50s, and 60s—the “prime of life” when many are still working or raising families. However, it can affect people younger or older than this as well.

Everyone is Included: It affects both men and women across all walks of life.

This is a question we hear often. While Alzheimer’s usually begins with memory loss, FTD typically starts with changes in behaviour or language. Because the symptoms look different, the support you need will be different too. That is why specialized information like what you’ll find here is so important.

Because the brain is complex, FTD shows up differently for everyone. You might hear doctors use specific names for these “subtypes”:

Behavioural-variant (bvFTD): This mostly affects personality and how someone interacts with others.

Semantic Dementia (SD): This makes it harder to remember the meaning of words or recognize familiar objects.

Progressive Non-fluent Aphasia (PNFA): This makes it difficult to physically produce speech, even when you know exactly what you want to say.

Individuals with FTD can also have parkinsonism and motor neuron disease. More information about the specific FTD subtypes can be found on the FRONTIER Frontotemporal Dementia Research Clinic’s website.

A glossary of common terms surrounding FTD can also be found on the FRONTIER website.

Learn more…

Wednesday 30th September
In-person and online

Find out more…

FTD Awareness Week

September 28 to October 4th
This year we are shining a
SPOTLIGHT ON FTD
To learn more about how to be part of this exciting campaign go to:

worldftdunited.net