If you or your loved one has frontotemporal dementia (FTD) and are struggling with speech and language impairments, you are not alone, and there are ways to help. FTD is when there is damage to the nerves in the frontal (region behind your forehead) and temporal (region behind your ears) lobes of the brain. Furthermore, FTD is a progressive disease that can have a major effect on the way you communicate. Understanding how FTD affects communication is important because it could help you manage this symptom and the challenges that come with it. Therefore, this article aims to guide you through this complex topic.

What is frontotemporal dementia? 

Frontotemporal dementia (FTD) is a rarer type of dementia caused by a build-up of certain proteins, tau and TDP-43, in your brain's nerve cells. This build-up of proteins causes the nerve cells to die, which stops the brain from working properly. FTD is known as a neurodegenerative disease because, over time, the build-up of proteins will increase and cause further damage to the brain. 

The symptoms of FTD can vary from person to person, however, they always start minimally and progressively get more severe. Some symptoms include communication difficulties, changes in behaviour, emotional and motility difficulties, and challenges with day-to-day tasks. FTD usually affects people who are older than 45 years old, and once diagnosed, it is important to create a care plan to provide the right care as the disease progresses.¹

There are two broad types of FTD:

Behavioural variant FTD (bvFTD)

bvFTD occurs when damage to the brain causes issues with behaviour and affects personality. The damage to the brain happens in the frontal lobe, which is important for processing information linked to controlling emotions, planning, problem solving, judgment, and focus.

Primary progressive aphasia (PPA)

PPA occurs when damage to the brain causes language difficulties. In this case, the brain's temporal lobes are affected, which is the region on the side of the head near the ears. The left temporal lobe is associated with storing names and the meaning of words, whereas the right temporal lobe controls how people recognise objects and other things.²

Most people associate dementia with memory loss, however, unlike most dementia types, FTD’s early-stage symptoms do not involve memory, and most people can remember recent events at this time. The first symptoms associated with FTD are changes in personality, behaviour, and communication.² In particular, PPA changes the way you communicate and affects the ability to read, write, speak, and understand others.¹ Understanding the ways FTD impacts speech and the way we interact can help in the management of challenges linked to the disease.

Why is communication important?

Communication is an important aspect of our lives because it helps us express ourselves and interact with one another. Without communication, we would be unable to exchange information about our feelings, needs, and ideas. Furthermore, communication is complex and, in addition to talking, it involves interpreting and understanding communication from others.³ Therefore, when speech and language are affected, it can have a huge effect on you or your loved one’s quality of life.

How does frontotemporal dementia affect communication?

As FTD progresses in individuals, speech issues will be more apparent as the disease will affect the way a patient communicates and the language they use. Patients may struggle to articulate what they are feeling, struggle to find the right word, muddle their words, or make unusual sounds when talking.⁴ Additionally, patients with FTD may use related words, such as ‘book’ instead of ‘newspaper’, or use substitute phrases, such as ‘the thing that you sit on’ instead of ‘chair’. 

Patients may also use words with no meaning, jumble their sentence structure, or simply not find the words they are looking for. It is common for those who are bilingual or multilingual to revert to the language they learned as a child and forget how to speak their second language.⁵

Primary progressive aphasia (PPA)

Primary progressive aphasia or PPA, occurs when there is degeneration, or damage, to the brain caused by FTD. Communication problems stem from PPA because brain damage causes speech and language issues. These speech and language symptoms start gradually and vary from person to person. There are three variants of PPA: semantic (svPPA), nonfluent/agrammatic (nfvPPA), and logopenic (lvPPA). These variants separate the different speech and language symptoms a patient may be experiencing.⁶ Patients with svPPA have difficulty understanding the meaning of words and naming people or objects. They tend to start to use generic words for objects, such as ‘animal’ instead of ‘dog’, or ‘thingy’ when they cannot name a familiar object. 

Furthermore, reading and writing abilities may also decline. Over time, these individuals will struggle to keep up with conversations and may stop talking altogether.⁷ Patients experiencing nfvPPA begin to struggle to pronounce words, their speech may become slurred, and a noticeable change in their voice may occur. Overtime, patients may start to take pauses mid-sentence and speak much slower than usual. 

nfvPPA tends not to affect patients reading and writing skills, therefore, patients may opt to use a pen and paper to note down what they are trying to say when their speech becomes severely affected.⁸ Patients usually suffer from memory issues and may find it difficult to follow long instructions or repeat sentences. Over time, their memory worsens, resulting in the inability to name objects and people, and recognise familiar faces. Reading and writing will become harder for these individuals.⁹

Impact on quality of life

The decline in the ability to communicate normally in patients with FTD can have a massive impact on them, causing distress and frustration to them or the people they are trying to communicate with. It may make having a conversation and being able to express themselves more difficult, which can become isolating. Some patients with FTD may stop talking altogether and, therefore, must learn ways to communicate that are non-verbal.² Depression and withdrawal from society are common when communication abilities are impacted. As well as this, patients could suffer from physical problems, such as weakness in mouth muscles, which is common for those with nfvPPA.⁸ 

Management strategies

Whilst there are no medical treatments to cure FTD or the communication difficulties, there are some strategies that can be implemented by professionals and loved ones to help manage speech and language impairments.

Non-verbal communication

Communication devices, such as tablets, picture books, and type-to-talk devices, are available for patients to use. This can be especially useful when patients struggle to get words out or their speech becomes slurred. Therefore, these devices allow patients with FTD to converse and express themselves.⁸ Additionally, the use of gestures, body language, and drawings are also ways to improve communication.²

Speech and language therapy

Speech therapists can aid with communication difficulties and provide better care for individuals with FTD. They will first analyse and determine the areas of speech that have issues and what the patients' needs are, as well as assessing whether the patients have problem swallowing. Upon their analysis, they will look at reading, fluency, repetition, and their understanding of words through a series of assessments. The therapists will then form a plan for the patient and execute it early on in their FTD diagnosis, to ensure patients can maintain communication for as long as possible, and improve their quality of life.¹⁰

Supportive interventions

Support groups offer emotional support to people with FTD and support for those who care for them. These groups allow people to socialise with others with the same condition, which helps with any feeling of loneliness or lack of motivation.²

Summary

Frontotemporal dementia (FTD) is a type of progressive dementia, unlike others, that does not start with memory loss, instead it starts with other symptoms, such as changes in communication abilities. FTD is caused by a build-up of proteins in the frontal and temporal lobes of the brain, causing these regions to die. Depending on the individual, speech and language are affected in different ways. Specifically, FTD causes primary progressive aphasia, which may cause a range of communication difficulties, such as muddling up words, forgetting words, slurred speech, difficulty reading and writing, and ceasing to talk altogether. 

This can have a massive impact on their quality of life as patients may feel isolated, become depressed, and be unable to express themselves. However, understanding the effects of FTD on speech and language is important for managing the condition, and there are some strategies that can help patients communicate for longer. Although, there is no cure for FTD or the associated communication issues, speech therapy, non-verbal communication methods, and support groups, can help patients navigate the challenges they face.