Frontotemporal Dementia and Aphasia: What to Know

While communication disorders have a number of neurological causes, the language disorder aphasia can be caused by a specific type of dementia. The National Institutes of Health reports that there are 180,000 new cases of aphasia, a speech disorder, in the U.S. each year. In some cases, aphasia is due to frontotemporal dementia, which often affects the area of the brain that controls language. These health conditions came to public attention earlier this year when the family of actor Bruce Willis shared his diagnoses with both.

What is frontotemporal dementia? What is aphasia?

Frontotemporal dementia is a breakdown of the brain’s frontal and temporal lobes that gets worse over time. The brain’s frontal lobe is associated with behavior and decision-making. The temporal lobe controls communication, including understanding and expressing language and producing speech.

Aphasia is a language disorder caused by damage to the brain from an isolated event, such as a stroke, or a progressive illness, such as frontotemporal dementia. When aphasia is caused by frontotemporal dementia or another progressive illness, it is referred to as primary progressive aphasia.

Aphasia Education Group at ChristianaCare
Our Aphasia Education Group for patients and loved ones meets on the first Wednesday of the month from noon to 1 p.m. on Zoom. Email jintintoli@christianacare.org or mmyers@christianacare.org to get details on joining.

Does frontotemporal dementia always cause aphasia?

No. In some people with frontotemporal dementia, the damage to the brain is more prevalent in the frontal lobe, which controls executive function. In these cases, people likely experience more behavioral symptoms and personality changes, rather than language symptoms like aphasia.

What are the early symptoms of aphasia and how does it progress?

Typically the first symptom is trouble finding words. We all have trouble thinking of words sometimes, but in someone with aphasia this becomes constant and disruptive.

Cognition (the brain’s ability to think and process information) is largely intact in the beginning. Someone with primary progressive aphasia might be able to drive, take care of their house and track their medications. They can often get by for a while, even as they’re losing their ability to express themselves and understand others.

As aphasia progresses, people become less fluent. They might only be able to produce a few words. They typically lose their grammar and are unable to build a sentence. Often there’s a loss of knowledge of the meaning of words and they have trouble understanding written and spoken language.

Aphasia Book Club
Meets Mondays from 12:15 to 1:15 p.m. Email meka.benson@christianacare.org to request details.

What is the treatment for aphasia?

We recommend speech therapy. There is no cure for primary progressive aphasia, but treatment can help people to cope with the loss of language.  In therapy, we work on meaningful, personalized activities to keep the brain engaged and to help access words and communicate important messages. We also work on strategies for the future with patients and their loved ones because as the aphasia progresses it will become harder to communicate.

Sometimes we use augmentative and alternative communication — low- or high-tech devices or methods — to supplement a person’s ability to communicate. These may include drawing, writing, gestures and facial expressions or speech-generating devices and other assistive technology. Patients and families should consult with their health care provider to learn about options.

How can I take care of my loved one with aphasia?

Give yourself and your loved one grace. This is not easy to navigate. Also it’s important to be flexible and adjust as needed. You’re trying to find a way to meet your loved one’s needs, while still giving them independence and autonomy.

Sometimes, a patient desperately wants help finding a word. They do not want to flounder any longer. Other times, they want another moment to think before a loved one jumps in. That’s really hard to communicate in the moment. I often suggest a simple hand gesture, like a hand up to mean “stop” and a wave to mean “help.”

As much as possible, continue with activities your loved one enjoys. Spend time together having simple conversations, reading magazines, newspapers or tablets, looking at photo albums, listening and singing along to music, playing board games or word games.

Tips to help with communication

While communication problems can be very frustrating for both of you, try to be patient, understanding and supportive. Here are some tips:

• Speak directly to your loved one. Keep eye contact.
• Speak slowly and simply. Use your normal tone and volume.
• Give your loved one enough time to answer.
• Focus on what the person is saying. Don’t focus on how they are saying it.
• Don’t fill in words unless you are asked.
• Limit background and other noise like screens and music.
• Ask the person to repeat something if you do not understand. Or make sure you understand what they said by asking them “yes” or “no” questions.
• Use drawing, hand gestures, facial expressions and writing to help communicate.

Follow-up care is a key part of your loved one’s treatment and safety. Keep all appointments, and call your loved one’s health care provider if they are having problems. It’s also a good idea to know test results and keep a list of the medicines they take.