Week 2: Understanding Frontotemporal Dementia — More Than Memory Loss

Frontotemporal dementia (FTD) is a group of brain disorders caused by progressive damage to the frontal and temporal lobes of the brain. These areas are responsible for personality, behavior, language, and executive functioning — the very skills that govern how we interact with the world.

Unlike Alzheimer's disease, which typically begins with memory impairment, early symptoms of FTD often involve striking changes in personality, communication abilities, or behavior. For many families, these changes are confusing and distressing long before a diagnosis is reached.

What Is Early-Onset FTD?

When FTD is diagnosed before the age of 65, it is referred to as early-onset FTD. Some individuals may begin showing symptoms in their 40s or 50s. Because of the younger age of onset, early signs are often misunderstood or attributed to stress, mental health issues, or midlife challenges, leading to misdiagnoses or delayed treatment.

Early-onset FTD brings unique challenges:

• Many individuals are still working full-time.

• They may be raising young children or supporting aging parents.

• Financial, legal, and emotional impacts are often far more complex than in late-onset dementias.

Key Symptoms and Presentations

FTD is not a single condition, but rather an umbrella term for several related disorders, including:

• Behavioral Variant FTD (bvFTD):
  Characterized by changes in personality, behavior, judgment, and impulse control. Individuals may act in socially inappropriate ways, show apathy, or lose empathy for others.

• Primary Progressive Aphasia (PPA):
  Involves gradual decline in the ability to speak, understand, read, or write. Language skills erode over time, while memory may initially remain intact.

• Movement Disorders Associated with FTD:
  Some forms of FTD are linked with physical symptoms similar to Parkinson’s disease or amyotrophic lateral sclerosis (ALS), affecting movement, balance, or motor skills.

It is important to recognize that memory can remain relatively preserved in the early stages, which often leads families and even healthcare providers to miss or misinterpret the signs.

The Diagnostic Journey

Obtaining an accurate diagnosis requires a careful evaluation, often including:

• Detailed clinical interviews and history-taking.

• Neuropsychological testing to assess cognitive and behavioral changes.

• MRI or PET scans to identify brain atrophy patterns.

• Genetic testing in certain cases, as FTD can sometimes run in families.

Misdiagnosis is common. Many individuals with early-onset FTD are initially diagnosed with depression, bipolar disorder, or even marital problems due to the behavioral changes. This delay can be emotionally taxing and delay appropriate support.

Why Awareness Matters

Raising awareness about the early and atypical signs of FTD is crucial. Early diagnosis allows families to plan for the future, access specialized care, and make the most of available interventions. Although there is currently no cure for FTD, early intervention can help manage symptoms and improve quality of life for both the individual and their loved ones.

For more information on FTD, please go to The AFTD’s website: https://www.theaftd.org/what-is-ftd/disease-overview/