Understanding frontotemporal dementia: What it is, symptoms and tips for caregivers

Frontotemporal dementia is an umbrella term used to refer to a group of progressive neurodegenerative diseases that affect the frontal and temporal lobes of the brain, causing them to stop working over time. Frontotemporal dementia is the most common form of dementia for people under age 60.

There are three different types of frontotemporal dementia, including a behavioral type, language types that are further classified as primary progressive aphasia (this group has three further subtypes) and motor types.

What causes frontotemporal dementia?

Family history is the only known risk factor for frontotemporal dementia (FTD). Most cases are sporadic, meaning frontotemporal dementia occurs by chance, without anyone else in the family having been affected. Some research studies indicate that prior traumatic brain injury may be a risk factor.

Like many brain diseases, FTD is an age-related condition. The average age that FTD develops is 58, with most people developing it between the ages of 50-80.

Signs and symptoms of frontotemporal dementia

The signs of FTD vary depending on the type. As FTD affects different parts of your brain, the deterioration of those parts causes you to lose certain functions or abilities.

For the behavioral variant type, symptoms may include:

• Changes in personality
• Disinhibited behavior
• Loss of judgement
• Lack of empathy and sympathy
• Change in eating habits
• Apathy

For the language subtypes, symptoms may include:

• Word-finding difficulties
• Difficulty coming up with the name of an object
• Difficulty articulating words and sentences

The progression of symptoms varies from person to person. Symptoms can progress quickly or slowly, lasting anywhere from 2-20 years.

Regardless of the particular type, FTD will impact all aspects of a person’s life, causing physical, cognitive and social changes. When communication becomes difficult, the condition can begin to impact relationships. Completing typical tasks at work often becomes challenging as well, impacting a person’s career and financial stability. For the motor types of frontotemporal dementia, movement and mobility can be affected, making independent living and transportation difficult.

How is frontotemporal dementia diagnosed?

There are a few steps involved in getting to an FTD diagnosis. A diagnosis is made by several parts:

• Gathering a good history of symptoms
• Completing cognitive testing (for example, a neuropsychological evaluation)
• Diagnostic imaging like MRI or PET scan

If you think you or a loved one is showing signs of frontotemporal dementia, it’s a good idea to discuss those concerns with your primary care physician. If appropriate, your doctor can refer you to a behavioral neurologist or other specialist who can provide a comprehensive evaluation and accurate diagnosis.

Treatment for frontotemporal dementia

Unfortunately, there are currently no treatments available to slow or stop the progression of FTD. But there are medications that can help manage symptoms and improve your quality of life. Your doctor can discuss the options with you based on your symptoms and lifestyle to make sure you get the care and treatment that is right for you.

Living a healthy lifestyle can also make a big difference in your health and well-being after a frontotemporal dementia diagnosis. Take care of yourself by staying active in all areas of your life—physically, cognitively and socially. Although you may face new challenges, keeping up with your life activities you enjoy, as well as social connections to friends and family, can help you maintain your quality of life as much as possible as the condition progresses.

If you find it challenging to stay active in any of these areas, ask your doctor for support and resources. Life may look different in some ways after an FTD diagnosis, but you don’t have to face it alone.

Caring for a loved one with frontotemporal dementia

Being a caregiver for someone diagnosed with a condition like frontotemporal dementia can be challenging, both physically and emotionally. It’s important to find your support network, whether that is family, friends or a formal support group. If you can, join a support group. This is a great way to obtain information, advice and support from others who truly understand what you’re going through.

When Demi Moore was asked the best advice she could give to families caring for individuals with dementia, she said this: “To meet them where they at. When you let go of who they‘ve been or who you think they are or who you would like them to be, you can stay in the present and take in the joy and the love that is present in there, for all that they are, not all that that they are not.”

If you’re concerned about your health or that of a loved one, talk to a doctor. You can also find resources through The Association for Frontotemporal Degeneration on coping with a diagnosis, finding support and living well with FTD.

Connect with a primary care physician today.