Aphasia awareness month

This posting contains updated content from a previously published blog in June 2022. 

In 2022, the entertainment world was abuzz when a social media posting about actor Bruce Willis yielded an outpouring of support from fans. The post, written by Willis's  former wife Demi Moore, indicated that “...Bruce has been experiencing some health issues and has recently been diagnosed with aphasia, which is impacting his cognitive abilities..”. Moore went on to say that Willis would be stepping away from his career in acting as a result of the diagnosis. 

A similar announcement was made in 2023 by talk show host Wendy Williams’s management team when it was revealed that she had frontotemporal dementia and aphasia. 

These and other announcements have left fans, the media, and the general public puzzled (What is aphasia?). However, these are diagnoses that speech-language pathologists see, treat, and help manage in their practices and clinics. Let’s gain a bit more clarity on what these conditions are, and how they impact functioning. 

The National Aphasia Association conducted a survey in 2016 to assess how much the public knew about aphasia. NAA found that only 8.8% of those surveyed knew that aphasia was an acquired disorder of language. Although a few years have passed since the administration of the survey, the likelihood is that few people still fully know and understand what such a diagnosis actually means. 

The American Speech-Language-Hearing Association defines aphasia as “...a language disorder that happens when you have brain damage…Damage [to the left] side of your brain may lead to language problems…”. As a result of the language centers of the brain being impacted, “aphasia may make it hard for you to understand, speak, read, or write.” Aphasia can differ in its level of severity and can showcase itself as different “types” dependent upon if 1) speech is fluent and uninterrupted, 2) if a person can comprehend spoken messages, and 3) if a person can repeat words/phrases. 

​Aphasia is acquired - it is not present developmentally or following birth - and can typically accompany the diagnosis of stroke. Aphasia can also occur as a result of other types of brain damage (e.g., traumatic brain injury, brain tumor, meningitis, seizures, encephalopathy) or be the sign of the onset of neurodegenerative disease (e.g., dementia). Generally, aphasia does not impact a person’s level of intellect, but rather how a person processes, understands, and uses language to interact with their environment. 

Further clarity on Willis's diagnosis came in 2023, with his family confirming that the former actor presents with a neurological condition known as frontotemporal dementia (FTD), the same diagnosis that Wendy Williams has.  

The National Institute on Aging (NIA) defines frontotemporal dementia within a family of brain disorders, which result from “damage to neurons in the frontal and temporal lobes of the brain. Many possible symptoms can result, including unusual behaviors, emotional problems, trouble communicating, difficulty with work, or difficulty with walking. FTD is rare and tends to occur at a younger age than other forms of dementia. Roughly 60% of people with FTD are 45 to 64 years old. FTD is progressive in nature, so symptoms will worsen over time and one’s overall status will decline. There is currently no cure for FTD, and the life expectancy following diagnosis can be less than two years to more than ten years, according to the NIA. 

There are three types of frontotemporal disorders:

1. Behavioral Variant Frontotemporal Dementia
2. Movement Disorders
3. Primary Progressive Aphasia 

Given that Willis and Williams were both reported to have challenges with communication, they present with characteristics that are consistent with Primary Progressive Aphasia (PPA). Signs and symptoms of PPA can include changes in communication and overall use/understanding of language. Speech can become slurred or an individual can become mute over time. Language needed for verbalizing, writing, listening, and reading purposes declines. On top of changes to language and communication, individuals with PPA often exhibit changes in cognition over time. These changes may not be overt at first, but a decline in skills such as memory, judgment, and self monitoring will wane. 

Given that speech, language, communication, and cognitive ability are unlikely to improve with this diagnosis, treatment with speech-language pathologists (SLPs) often focuses on establishing communication strategies that can be utilized when individuals begin to lose communicative functioning. SLPs also work closely with families and care partners to ensure that they are well versed in how to communicate with their loved one in the most effective manner. 

Willis’s and Williams’s stories have definitely placed aphasia in the spotlight. It is a diagnosis that more of the general public should be aware of given its high prevalence - it’s estimated that 1 in every 250 people in the US is living with aphasia. Persons with aphasia should be afforded the same opportunities to engage socially and maintain strong connections with others. The more the public understands about aphasia, the more support can be offered for persons with aphasia. 

June is Aphasia Awareness Month. If you are looking for resources specific to all things aphasia, consider the following websites: 

• American Speech-Language-Hearing Association
• National Aphasia Association 
• American Stroke Association

References:

• CBS: Wendy Williams diagnosed with primary progressive aphasia and frontotemporal dementia
  
• CNN: Bruce Willis has a progressive brain condition you may not have heard of 
  
• National Aphasia Association: Primary Progressive Aphasia
  
• National Aphasia Association: Understanding Bruce Willis's Aphasia Announcement
  
• National Institutes on Aging: What are Frontotemporal Disorders? Causes, Symptoms, and Treatment
  
• Wendy Williams has aphasia and frontotemporal dementia. What are these diseases?