What Is Frontotemporal Dementia? Tips to Recognize and Understand This Complex Condition

What happens when dementia doesn’t look like dementia? Frontotemporal dementia doesn't have the classic symptoms you may expect. Learn more about this condition and how you can recognize it.
frontotemporal dementia

It was supposed to be a joyful family reunion. Katherine had been looking forward to hosting her family for Thanksgiving. It had been so long since they’d all been together, and her parents had recently sold the family home and relocated to a downsized apartment—all to be closer to her and her kids. 

But the celebration didn’t go as planned. 

After spending a few minutes with her father, it was clear something was different with him. Gone was his buttoned-up banker’s demeanor, and in its place was a man who was argumentative and brash. 

As a busy working mom, she’d only half listened to her own mother as she complained to her on the phone about his recent issues with erratic spending and personality changes. She’d chalked it up to a belated mid-life crisis, brought on by the big life change of leaving their home of over 30 years. 

But, seeing him in person, it became clear—the changes he was experiencing went deeper. 

Katherine was confused, and concerned. She didn’t know where to turn. 

As the weeks went by, her father’s issues intensified. He became paranoid and secretive—spending uncharacteristically large sums of money on hotels and luxury goods when he had always been quite frugal with his finances. 

His personality changes also included outbursts at his family, and Katherine grew concerned that he seemed to recall a skewed version of events that sharply differed from reality. But she could not get him to listen. 

Finally, Katherine and her mother convinced him to attend a doctor’s appointment to evaluate the changes he was experiencing. Katherine was able to voice her concerns to the doctor, sharing details about the issues she was noticing. 

Even with Katherine and her mother advocating strongly for him, it still took some time for his healthcare team to arrive at a consensus on his diagnosis. 

Finally, they determined Katherine’s father was dealing with frontotemporal dementia.  

What is Frontotemporal Dementia?

frontotemporal dementia neurons

Frontotemporal Dementia (FTD) is the term for a collection of brain disorders, characterized by the degeneration of brain cells (neurons) in the frontal and temporal lobes of the brain. 

These portions of the brain are responsible for many crucial functions. 

The frontal lobe is often conceptualized as the seat of our personality. It’s also critical for skills in reasoning, judgment, insight, and decision making. 

The temporal lobe is responsible for making sense of what we hear. It plays a vital role in how you understand and process language. It’s also a key center for your memory and visual processing capabilities.  

Frontotemporal dementia is a type of dementia that impacts the core functions of these two portions of the brain. 

As the brain’s nerve cells are damaged by the progression of FTD, the connections and networks they uphold break down, leading to widespread impacts on neural functioning. 

Over time, the brain tissue in the frontal and temporal lobes becomes visibly smaller due to the breakdown and death of these cells and the cumulative loss of their interconnectivity. 

People experiencing this type of dementia often present with signs and symptoms impacting their personality, behavior, communication, and thinking skills. 

FTD is often difficult to diagnose, and in some cases may be misdiagnosed as a mental health or psychiatric condition. 

It’s a much less prevalent type of dementia than Alzheimer’s disease, and is estimated to impact around 60,000 people in the United States. FTD is the most common type of dementia in people under age 60. 

Researchers have discovered this type of dementia is caused by mutations in five specific genes. Scientists are currently investigating the impact of these mutations on chromosome 9, in an effort to better understand the origins of this condition. 

When more is known about how FTD develops, and those who are at risk, the hope is more precise treatments and therapeutics can be created to address it. In fact, current therapeutic trials are underway with this exact goal in mind. 

To better understand the different ways frontotemporal dementia can show up in those who experience it, let’s look more deeply at the different types of FTD. 

What are the Different Types of Frontotemporal Dementia? 

different types of frontotemporal dementia

If you’ve been following along with our recent Word to the Wise dementia-focused content, you’re aware that dementia is conceptualized as an umbrella term, under which many different subgroups are gathered. 

Frontotemporal dementia is a specific type of dementia, which also has its own subgroups. 

The three primary types of frontotemporal dementia are primary progressive aphasia (PPA), movement-based frontotemporal dementia, and behavioral variant frontotemporal dementia (bvFTD). 

Let’s look at each of these types in more detail. 

Primary Progressive Aphasia

This subtype of FTD has been popping up in the news recently, albeit often mislabeled as simply “aphasia” (which is a different issue and origin than PPA). 

That’s because this is believed to be the type of dementia Bruce Willis is experiencing

But what is primary progressive aphasia? And how is it related to dementia? 

In a nutshell, primary progressive aphasia centers around difficulties with speech, language, and communication skills. 

Language issues are usually the first noticeable symptoms of this subtype of FTD. Issues with memory, reasoning, and judgment that are commonly associated with dementia often show up as the condition progresses. Behavioral changes can also be seen in mid to late stage PPA. 

Many crucial language centers are located within the frontal and temporal lobes of our brains, and primary progressive aphasia is believed to impact these areas first as it develops. 

Aphasia is a term used to describe speech and language issues, derived from the Greek term for “speechlessness.” 

While aphasia is typically the result of a stroke or traumatic brain injury, primary progressive aphasia is classified as a type of dementia that causes difficulties with speech and language. 

People with PPA commonly experience difficulties with—

  • Word finding 
  • Understanding what is said to them
  • Difficulty speaking (may omit linking words and speak in a simplified manner known as telegraphic speech)
  • Difficulty reading and writing
  • Slurred or slowed speech patterns 

Primary progressive aphasia is further broken down into additional subtypes, depending upon the nature of the language problems that show up first. You can learn more about the specific PPA subtypes here. 

Behavioral Variant Frontotemporal Dementia

This is the type of dementia Katherine’s father (from the beginning of the article) was eventually diagnosed with. 

His outward symptoms were dramatic changes in his personality and behavior that were very apparent to those who had known him long. Due to his impaired insight, however, he did not recognize the changes in himself, and became paranoid and untrusting of his family members. 

The most commonly occurring type of FTD, behavioral variant frontotemporal dementia (bvFTD) is characterized by changes in cognition (thinking skills), impacting a person’s judgment, awareness, reasoning, and insight. It often leads to noticeable changes in behavior and personality. 

Unfortunately, bvFTD is often challenging to diagnose as a type of dementia, because a person’s memory skills may remain relatively intact in its early to mid stages. 

Other symptoms of behavioral variant FTD include—

  • Loss of interest in previously preferred activities and people 
  • Acting impulsively without considering consequences
  • Repeating activities, words, or phrases over and over 
  • Difficulty sequencing steps for everyday tasks 
  • Difficulty organizing and prioritizing tasks 
  • Being inappropriate without awareness

Movement-Based Frontotemporal Dementia

In some cases, FTD primarily impacts the movements of those who have it. Two neurological disorders are associated with this subtype of FTD—corticobasal syndrome, and progressive supranuclear palsy.

These rare disorders are characterized by changes in key parts of the frontal and temporal brain lobes, responsible for coordinating and executing body movements. 

In some cases, FTD can combine with or mimic the symptoms of another disorder. This is the case in the movement-based forms of FTD known as frontotemporal dementia with parkinsonism, and frontotemporal dementia with motor neuron disease (FTD-ALS)

The former of these shows up with similar outward symptoms to Parkinson’s disease, but arises from a different causation. The latter represents a combination of bvFTD with amyotrophic lateral sclerosis (also known as ALS or Lou Gehrig’s disease). 

Now that you have an understanding of the different types of frontotemporal dementia—how can you help your loved one if they’ve been diagnosed with FTD, or if you’re concerned they may be experiencing this challenging type of dementia? 

What If My Loved One is Diagnosed with Frontotemporal Dementia? 

mother Diagnosed with Frontotemporal Dementia

If you suspect your loved one may be dealing with FTD or if it’s been confirmed by a medical evaluation—you may be feeling a complicated swirl of emotions. 

It’s natural for loved ones to experience a measure of grief upon receiving this diagnosis. 

You may also feel a sense of relief that the changes you’ve been witnessing in your loved one are the result of a real, identifiable cause. 

If someone you love has been diagnosed with frontotemporal dementia, it’s important to realize— you are not alone. 

While there is not yet a cure for dementia, or a proven method to slow its progression, there are ways to address and manage its symptoms.

Doctors, nurses, mental health professionals, speech-language pathologists, and physical and occupational therapists can join your team to create a holistic treatment plan for your loved one with FTD. These professionals can also assist you in coordinating additional care for your loved one, when this becomes a necessity. 

In some cases, antidepressant medications are used to help manage symptoms of FTD. These medications are used to target behavioral issues in FTD such as depression, impulsivity, anxiety, or obsessive-compulsion. 

In addition to treatment, there are a variety of solutions to help you coordinate care for your loved one and even protect them from inappropriate spending behavior. WayWiser provides an all-encompassing tool, available both on your phone or a computer, to connect yourself with anyone helping care for your loved one. Additionally they have features that allow you to monitor their financial accounts, keeping them safe from scammers and themselves.

Though you may be laser-focused on securing your loved one the best treatment and support you can during this time, it’s also vital to not forget about your own needs.  

As a loved one caring for a person with FTD, it’s important to remember to take care of yourself, as well. 

It’s ok to step away and give yourself a “time out” when you need one. While it can be tempting to argue or attempt to reason with a person with FTD, it’s often best to work to accept rather than challenge these behavioral symptoms. 

People with FTD often benefit from the establishment of regular routines and schedules to manage symptoms. 

Reduced choices can promote independence in decision making, while limiting options for clarity. Using statements as opposed to questions is also a powerful strategy for communicating effectively with individuals with FTD, as they’re more easily processed by the brain. 

If you notice compulsive behaviors related to eating, drinking, or spending, it may be wise to offer additional assistance with these activities. Redirection can also be used to focus your loved one’s attention on another topic or task when necessary. 

Additional resources and info can be sought via organizations devoted to educating people about frontotemporal dementia. These include The Association for Frontotemporal Degeneration and The Alzheimer’s Society

Knowledge is a powerful tool in understanding and living with dementia when it impacts your family and loved ones. Using your enhanced awareness and strategies, you can provide the best assistance and support for your loved one with frontotemporal dementia. This will lead to an improved quality of life not only for them—but also for you. 

Here at WayWiser, it’s our mission to help older adults and their loved ones to live fulfilling, informed, active lives. Visit our Word to the Wise blog regularly for top quality content on topics that matter to you. 

Have another question? Ask an expert.

Our team is here for you. If you have a question about caring for an older adult or other member of your family—be it physical, legal, medical, financial, or anything in between—we’ll have one of our Trusted Advisors get back to you ASAP.

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