Guide to Frontotemporal Dementia: What You Need to Know

When we think of dementia, we often picture it as a single condition. The reality is that it’s actually an umbrella term that covers a range of disorders affecting the brain. Because there are different types of dementia, conditions impact individuals differently, producing different symptoms and progressing in specific ways. Understanding the distinctions between these types is important because it influences how we approach care and treatment.

One of the lesser-known types is frontotemporal dementia (FTD), which primarily affects areas of the brain connected to personality, language, and behaviour. But what exactly does that mean, and how does it manifest? Are there treatments available? These are often the questions caregivers and loved ones have when someone they know is diagnosed, and they’re important questions to answer.

Let’s explore FTD in more detail and how Sagecare is helping residents and caregivers navigate this unique condition.

What is Frontotemporal Dementia?

Frontotemporal dementia (FTD) is an overarching term that describes a group of rare disorders affecting the frontal and temporal areas of the brain. These areas are associated with language, behaviour, and personality. According to the Alzheimer Society of Canada, FTD is estimated to make up approximately five to ten percent of all dementia cases.

FTD occurs when parts of the lobes of the brain shrink, also referred to as atrophy. In some cases, it can be misdiagnosed as Alzheimer's, but FTD tends to manifest earlier in life — typically between the ages of 40 and 65.

Symptoms & Causes

Understanding the symptoms and causes of any aging condition is a valuable tool for caregivers and loved ones, as it can help provide clarity and ensure you’re utilizing the appropriate resources for their care and well-being.

Symptoms

The symptoms of FTD can look different for each individual, though there are often common manifestations to look out for.

Behavioural Changes

Behavioural changes are the most common symptoms of FTD and typically involve significant changes in behaviour and personality. These symptoms include but aren’t limited to:

●        A loss of empathy and other social skills

●        A lack of interest (known as apathy)

●        Compulsive behaviours such as tapping, clapping, or repeatedly smacking lips

●        Declined personal hygiene

●        A drastic change in eating habits, including overeating or indulging more frequently in sweets and ​​carbohydrates

●        A lack of judgement and/or inappropriate social behaviour

Movement

There are rare subtypes of frontotemporal dementia that can cause a range of movement symptoms — similar to those seen in ALS or Parkinson's disease — including:

●        Muscle spasms or twitches

●        Reduced coordination

●        Muscle weakness

●        Tremors

●        Difficulty walking

●        Trouble swallowing

Speech/Language

Additional subtypes of FTD can impact an individual’s ability to speak and communicate. Subtypes such as primary progressive aphasia, semantic dementia or progressive agrammatic aphasia can lead to:

●        Difficulty naming common items

●        Increased trouble with written and spoken language

●        Forgetting the meanings of words

●        Difficulty building sentences

These symptoms can make it difficult for caregivers to take on the responsibility of everyday care on their own. At Sagecare, our nurse-led team is trained to provide the services and community individuals with FTD need and deserve, ensuring they feel safe and comfortable in this new phase of their lives.

Causes

It’s unclear what causes the frontal and temporal lobes of the brain to shrink and certain substances to build up. What experts do know is that individuals with FTD have unusual amounts of proteins called tau and TDP-43 inside nerve cells, or neurons, in their brains. The build-up of those proteins causes the neurons to die and lead to irreversible damage.

Diagnosis

While there isn’t one single test to determine if someone has frontotemporal dementia, doctors do diagnose the condition through a series of exams and questions to rule out other possible causes, since early detection is key. This process typically includes:

●        Reviewing medical history for any connections to FTD

●        Brain imaging scans, including MRIs, PETs, and/or SPECTs

●        Physical and neurological exams to determine language, behaviours, memory, and executive functions

The Stages of Frontotemporal Dementia

In the early stages of frontotemporal dementia, you might notice changes in behaviour or problems with speech, but these issues can show up separately at first. As the condition progresses, though, these symptoms tend to overlap and become more distinct.

Unlike Alzheimer’s, people with FTD often continue to be aware of things like the current year, and memory loss typically isn’t a major concern in the beginning. However, as FTD advances, more general dementia symptoms, like confusion and forgetfulness, start to appear. A decline in motor skills and difficulties with swallowing can also develop in the later stages.

Frontotemporal Dementia Treatments

Unfortunately, there are no proven ways to slow FTD or to cure it altogether. This type of dementia affects ​​different areas of the brain than Alzheimer's disease, which means common dementia medications do not work as a treatment for FTD.

Learning as much as possible about this condition can help caregivers understand and respond to someone’s changes in behaviour and personality.

Managing Symptoms

The symptoms that manifest in a person with frontotemporal dementia are ones that the individual cannot control. As they develop over time, it’s important for caregivers to learn how to adjust their ​​expectations and look for new ways to support them through these changes.

Someone with FTD may act aggressively, compulsively, or out of their normal character. In those moments, it’s important to maintain a positive, reassuring environment. In some cases, it may be worth exploring professional resources that can take the daily care responsibilities off your hands so that you can focus on simply being emotional support for your loved ones.

Compassionate FTD Care in Toronto

Caring for someone with dementia involves navigating those daily challenges while still providing emotional support as your loved one faces changes in their memory, behaviour, and abilities. But sometimes, being the sole caregiver is just too much to take on.

At Sagecare, we’re a nurse-led community dedicated to providing compassionate care for those living with all forms of dementia. With a roster of experienced PSWs, recreational therapists, art therapists, administrators, and so much more, we ensure our residents feel safe and at home in their new environment.

We understand firsthand the complexities and nuances of conditions like frontotemporal dementia. With an integrated team of professionals and continuous support and attention, we help residents and their families feel at ease.

Don’t hesitate to reach out to our team if you’d like to learn more about frontotemporal dementia and how we care for the residents in our community.