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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.” FTD covers a group of brain conditions that primarily affect the frontal and temporal lobes, brain regions which are responsible for personality, behaviour, and communication.

Frontotemporal dementia (FTD) is caused by the gradual loss of nerve cells in the frontal and temporal lobes. It accounts for around 15% of all dementia cases and tends to occur in people under the age of 65 years, although it can occur at any age. FTD affects both men and women equally.

In ~20% of people diagnosed with FTD, the disease is due to a mutation on a single gene, most commonly MAPT, GRN, and C9orf72. In these situations, because affected people carry one faulty copy of the gene and one healthy, their children have a 50% risk of inheriting the faulty copy from the affected parent. In these instances, FTD is often described as ‘familial’ or ‘genetic’. Another 20% of people with FTD also show a family history of the disease but where no single gene mutation has been identified. For the majority of cases, however, the causes for FTD are still unknown and are likely to be a combination of environmental and genetic risk factors. Often these cases without a clear cause are labelled ‘sporadic’.

The symptoms of frontotemporal dementia (FTD) depend on the specific regions of the brain that are impacted. The frontal lobes are crucial for planning, social behaviour, speech production, and decision-making. The temporal lobes are essential for language comprehension and conceptual understanding. People with FTD may experience a range of symptoms, including alterations in cognitive abilities, shifts in personality, difficulties in language skills, or impairments in movement and coordination.

Whilst FTD is a neurodegenerative condition that will 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.

There are three main subtypes of FTD.

Behavioural-variant frontotemporal dementia (bvFTD)
This is the most common presentation of frontotemporal dementia and accounts for about half of all cases of FTD. It predominantly affects the frontal lobes of the brain leading to changes in personality and behaviour. Individuals with bvFTD may become impulsive, socially inappropriate, apathetic (less motivation or initiative), or emotionally detached. They may also show reduced empathy and poor judgement. People with bvFTD typically do not recognise the changes in their own behaviour. They frequently lack awareness or concern about the impact their behaviour has on the people around them.

Progressive nonfluent aphasia
Progressive nonfluent aphasia (PNFA) primarily affects the left inferior frontal lobe, the region that is responsible for speech production. People with PNFA find that speech becomes slow and effortful, and struggle to form sentences or pronounce words clearly. In contrast, their understanding of language remains preserved. With disease progression, some people will develop additional difficulties with movement coordination, for example fine movement control, or difficulty walking.

Semantic dementia
Semantic dementia (SD) primarily affects the temporal lobes. The hallmark of semantic dementia is the progressive loss of the meaning of words. Additional language skills, including the ability to produce speech and repetition of phrases and sentences spoken by others, are unaffected. Although the affected person may continue to speak fluently, their speech becomes vague and difficult to understand because words are omitted or substituted. They struggle to understand words and recognise familiar objects.

As the disorder progresses, people with semantic dementia may also exhibit changes in behaviour like those seen in bvFTD, such as disinhibition and rigid food preferences.

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.

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