What is Frontotemporal Dementia? Symptoms, Diagnoses, and Treatment

FTD is commonly known as frontotemporal dementia, frontotemporal degeneration, or Pick’s disease, and is a group of disorders that are characterized by deterioration of the frontal and/or temporal regions of the brain. It is the second most common form of dementia in people under the age of 65. The 5 subtypes FTD are:

• Behavioral Variant FTD
• Primary Progressive Aphasia
• ALS and Frontotemporal Degeneration
• Corticobasal Syndrome
• Progressive Supranuclear Palsy

Symptoms for FTD can vary. Affected individuals can experience gradual changes in their behavior and personality and may have difficulties in thinking and communicating effectively. The progression and the specific symptoms that develop can vary from one person to another. 

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What are the Symptoms of FTD?

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FTD can present with a number of symptoms, which can vary among individuals and tend to present themselves more clearly as patients move through the 7 stages of frontotemporal dementia. The age of onset is typically between 20-80. Common symptoms include:

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• Personality/behavior changes
• Compulsiveness
• Inappropriate behavior
• Apathy
• Lack of empathy
• Difficulty with decision-making
• Difficulty with good judgment
• Difficulty with organization, attention
• Difficulty with attention
• Difficulty speaking
• Difficulty understanding language
• Dyslexia (difficulty understanding written word)
• Dysphagia (difficulty writing words)
• Changes in diet or eating habits
• Difficulty swallowing (dysphagia)
• Decline in motor function
• Muscle loss (atrophy)
• Muscle weakness
• Muscle stiffness
• Balance problems
• Difficulty walking
• Memory loss

How is FTD Diagnosed? 

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FTD can be clinically diagnosed through identification of key symptoms, understanding family history, and evaluations of behavior, language, memory, visual-spatial and cognitive function. Physicians might also recommend an MRI and PET scan to evaluate the affected areas of the brain.

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Additionally, genetic testing can help identify the type and cause of your frontotemporal dementia. There are 10+ genes associated with causing FTD, and 15-20% of patients with FTD have an identifiable genetic cause. Another advantage to genetic testing for FTD even after a clinical diagnosis is access to clinical trials, many of which require genetic diagnoses to participate. 

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If you or a loved one has received a clinical diagnosis of FTD, and want to understand if there is a genetic cause, Probably Genetic offers no-cost genetic testing and genetic counseling to patients with confirmed eligibility. To be eligible, patients must be clinically diagnosed with FTD, have not already received a genetic diagnosis, and be willing to participate in free pre-test genetic counseling. Additionally, blood relatives of patients with FTD who have a confirmed variant in the progranulin (GRN) gene are also eligible. 

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Probably Genetic is dedicated to offering as many tests as possible and commits to re-reviewing previously waitlisted applications as our testing capacity grows. 

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What are Common Misdiagnoses for FTD?

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Due to the overlap of symptoms with other conditions, the variety of symptom presentation, and lack of awareness in the medical community about FTD, many patients are misdiagnosed. Common misdiagnoses include: 

• Alzheimer’s
• Parkinson’s
• Psychiatric Condition (schizophrenia, bipolar disorder, etc.)
• Other forms of dementia

How is FTD Treated?

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Currently, there is no single, approved treatment for FTD. Treatment focuses on managing the symptoms and may vary significantly from one individual to another. Common treatments include:

• Medications: To manage behavioral changes or memory loss.
• Therapies: Speech or physical therapy
• Nutritional Support: To manage feeding difficulties and gastrointestinal issues.

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As research continues, clinical trials and new therapies are being developed, providing hope for better management and treatment options in the future.

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Managing FTD

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Effective management of FTD involves a combination of medical care, supportive therapies, and a strong support network. Those with a genetic diagnosis may also have additional clinical trial opportunities they should discuss with their physician.

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‍No-Cost Genetic Counseling & Testing Program

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Probably Genetic offers a no-cost genetic counseling & testing program for individuals with FTD. The process to apply is straightforward:

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1. Begin the Online Symptom Assessment: Describe the symptoms you or a loved one is experiencing.

2. Complete Your Profile: Provide additional necessary information, including your address for the sample collection kit.

3. See if You Qualify: You’ll be notified via email regarding your eligibility.

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Building a Support Network

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Connecting with others who understand your experiences is crucial. Our partners at the Bluefield Project to Cure FTD have built a strong support network for patients. They offer resources and community support to help families manage the challenges of FTD.

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By leveraging these resources, patients and families can gain better insights into managing FTD disorder and connecting with others who share similar experiences. Whether you're seeking information, community support, or considering genetic testing, these resources can help you navigate the journey with FTD. Get started today.