Understanding the 7 Stages of Frontotemporal Dementia (FTD)

Frontotemporal dementia (FTD), also known as frontotemporal degeneration, is a progressive neurological condition that primarily affects the frontal and temporal lobes of the brain. These areas are responsible for personality, behavior, and language, which means FTD can significantly alter a person's behavior, emotions, and ability to communicate. Unlike Alzheimer's disease, FTD often begins at a younger age, typically between 45 and 65, and progresses through distinct stages. Understanding these stages can help patients and caregivers prepare for what to expect and connect with medical and patient communities experiencing similar symptoms.

Stage 1: No Visible Symptoms

Duration: Though it varies, this stage typically lasts for up to 2 years.

In the earliest stage of FTD, there are no noticeable symptoms. The disease is starting to progress within the brain, but there isn’t enough impairment to become noticeable externally. This stage is often undetected, and there are no apparent changes in behavior, personality, or language, which means FTD typically goes unnoticed during this stage.

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Stage 2: Mild Behavioral Changes

Duration: 1-2 years

As FTD progresses, subtle behavioral changes may begin to emerge. These might include slight personality shifts, irritability, or difficulty with tasks that require planning and organization. For example, a person who was once very organized might start neglecting responsibilities or show uncharacteristically poor judgment. Friends and family might notice that something is off or different but the changes are often attributed to stress or aging rather than a serious underlying condition.

Stage 3: Moderate Behavioral Changes and Apathy

Duration: 2-3 years

During this stage, behavioral changes become more pronounced. The individual may display inappropriate social behavior, lose interest in activities they once enjoyed, or exhibit impulsive actions. Apathy, or a lack of interest in anything, becomes more evident. This can be distressing for loved ones, as the person with FTD may appear to lose their sense of empathy, becoming more self-centered and less emotionally responsive. At this point, the disease can often be misdiagnosed as a psychiatric disorder or early-onset Alzheimer's.

Stage 4: Language and Communication Difficulties

Duration: 2-4 years

Language problems start to surface more prominently in this stage. The person may struggle to find the right words (also known as aphasia), use incorrect words, or have difficulty understanding language, which can all lead to frustration and social withdrawal. Communication becomes increasingly challenging, and the individual might instead begin relying on non-verbal cues or gestures. This stage is often when caregivers and medical professionals recognize the need for a more in-depth neurological evaluation.

Stage 5: Loss of Motor Skills and Coordination

Duration: 1-2 years

As FTD progresses, it can begin to impair motor functions due to the affected areas of the brain. Individuals may experience difficulty with movement, including problems with balance and coordination or symptoms similar to those seen in Parkinson's disease, such as tremors or rigidity. This stage can lead to a decline in the person’s ability to perform daily activities, putting more responsibility on caregivers.

Stage 6: Severe Cognitive and Physical Decline

Duration: 1-2 years

In this stage, the cognitive and physical abilities of the individual severely decline over a 1-2-year period. Some become completely dependent on others for their care, losing the ability to communicate effectively or perform basic tasks like eating, dressing, and bathing. Memory loss tends to become more significant during this period, although it may not be as profound as in Alzheimer's disease. This decline might look like not recognizing loved ones or becoming disoriented in familiar surroundings.

Stage 7: Late-Stage FTD (End Stage)

Duration: 1-2 years

The final stage of FTD is marked by profound physical and cognitive impairment. The individual may become bedridden and lose the ability to communicate entirely. Swallowing difficulties often develop, increasing the risk of aspiration pneumonia, which is a common cause of death in FTD patients. Palliative care tends to become the focus during this stage, aiming to ensure comfort and dignity in the final

months or years of life.

What to Know About Patients With FTD

The progression through the 7 stages of frontotemporal dementia can vary from person to person, both in terms of the duration and the specific symptoms and severity of symptoms experienced. On average, the disease progresses over 8-10 years from the onset of symptoms. Early diagnosis is crucial for symptom management, connecting with patient networks, and planning for the future, which can improve the quality of life for both the patient and their caregivers.

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If you suspect that you or a loved one might have frontotemporal dementia, talk to your doctor about getting a diagnosis. If you or a loved one has already received a clinical diagnosis, consider getting a genetic test to better understand risks and take proactive steps to manage the 7 stages of frontotemporal dementia. Genetic testing results can be critical for admission to current and future clinical trials for research and drug development purposes. For eligible patients diagnosed with FTD, Probably Genetic will provide free genetic counseling and testing to determine a genetic diagnosis. Here’s how to determine your eligibility for no-cost genetic counseling and testing through Probably Genetic:

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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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