Frontotemporal disorders—sometimes known as frontotemporal degeneration or frontotemporal dementia—are a group of neurodegenerative disorders associated with changes in the brain’s frontal and temporal lobes. These areas of the brain control functions related to personality, behavior, and language.
Our understanding of frontotemporal disorders has changed as researchers continue to uncover new information. Currently, researchers are using “frontotemporal lobar degeneration” (FTLD) as an umbrella term for three broader categories of frontotemporal disorders: behavioral variant frontotemporal dementia (FTD, also known as Pick’s disease), primary progressive aphasia (PPA), and movement disorders.
Percentage of dementia cases caused by FTD
Percentage of people with FTD diagnosed between age 45 and 64
Percentage of frontotemporal disorders identified as having a genetic cause
People with FTD experience atrophy (or shrinking) of the brain’s frontal and temporal anterior lobes, as well as a buildup of certain proteins in the brain—but the cause of these changes is unknown. FTD has been linked to genetic mutations in some cases, but more than half of people with FTD have no family history of the disease.
Additionally FTD and amyotrophic lateral sclerosis (ALS) share some genetic characteristics and may share common causes in some cases. Researchers have found that 10-15% of people with ALS develop FTD (and vice versa), suggesting a strong link between the two. In fact, organizations like the Alzheimer’s Association actually list ALS alongside other FTLD-categorized movement disorders like progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS). Rather than two distinctly separate diseases, some researchers are beginning to think in terms of an ALS-FTD spectrum, with diagnoses depending on which types of symptoms appear first.
FTD typically begins between 40 and 65 years old but can also occur later in life. Specific symptoms, and the order in which they appear, can vary from person to person and from one stage of the disease to the next. This typically depends on which parts of the brain are affected. Generally, changes in the frontal lobe affect behavior and changes in the temporal lobe affect language and emotions. Symptoms are progressive, which means they worsen over time.
The most common signs of behavioral variant FTD are related to dramatic changes in behavior and personality. These changes can result in impulsive, apathetic, socially inappropriate, and/or repetitive compulsive behavior. A person with FTD may have trouble planning or prioritizing tasks, lack empathy and interpersonal skills, have decreased energy, change their eating and personal hygiene habits, and appear distracted, disinterested, or agitated.
Primary progressive aphasia (PPA) disorders involve problems with language or loss of speech. While a person with FTD may not have memory issues, they can experience difficulty speaking or understanding written or spoken language, have trouble naming objects or remembering words, and make mistakes in sentence construction.
Movement disorders that fall under the FTLD umbrella may involve symptoms like tremors, muscle spasms, poor coordination, and muscle weakness.
There is no single diagnostic test for FTD. A diagnosis can only be confirmed by a genetic test (if hereditary) or a brain autopsy after death.
To make a diagnosis, doctors will look at a person’s symptoms and medical history and rule out other conditions. This process may involve blood tests, a sleep study, neuropsychological testing to assess reasoning and memory skills, and brain scans.
It can be challenging to diagnose frontotemporal disorders because their symptoms overlap with many other conditions. FTD is often misdiagnosed as a mood disorder, stroke, or Alzhemier’s disease.
There is no cure for FTD. Drugs that are used to slow the progression of Alzheimer’s disease don’t seem to help and may even worsen symptoms of FTD. Other medications and therapies, such as antidepressants, antipsychotics, and speech therapy, can help manage some symptoms.
People with FTD may benefit from lifestyle changes, modifications to the home environment, and help with daily activities. For example, someone with FTD may need a calm environment and structured routines to avoid triggering behavioral symptoms. Family members and caregivers often have to learn new ways to interact and communicate with their loved ones, and often must help with tasks like managing finances and transportation.
FTD progresses steadily and rapidly. People with FTD typically live six to eight years with the condition, but that time can range from less than two years to more than 10 years. Many individuals will eventually require around-the-clock care and monitoring.
The American Brain Foundation is currently funding research to explore links between a variety of frontotemporal disorders. This includes a project to develop more effective diagnosis and screening tools for speech impairment and loss of muscle function in ALS-FTD and Lewy body spectrum disorders.
We are also currently funding a researcher who is using biomarkers and brain imaging to uncover links between CBS, PSP, and Alzheimer’s in order to better understand why these disorders commonly occur together. These research projects will yield insights that will help us better understand how the brain changes in people with FTD.
Brain & Life®: Frontotemporal Dementia (FTD)
NINDS: Frontotemporal Disorders
Mayo Clinic: Frontotemporal Dementia
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