What It’s Like Living With Aphasia—and How to Support a Loved One With the Condition
Bruce Willis, the 67-year-old actor and star of classic action movies like Die Hard, is halting his acting career after being diagnosed with the language disorder aphasia. On March 30, his daughter Rumer, ex-wife Demi Moore, and other family members announced the diagnosis on Instagram.
“Our beloved Bruce has been experiencing some health issues and has recently been diagnosed with aphasia, which is impacting his cognitive abilities,” the family wrote. “As a result of this and with much consideration Bruce is stepping away from the career that has meant so much to him.”
Here’s what experts say about living with the condition and caring for someone who has it.
Living with aphasia
Symptoms vary, but generally, aphasia affects people’s ability to speak or comprehend language. Speech, reading, writing, and the ability to listen can be affected. It often occurs suddenly after a stroke or other brain injury damages parts of the brain involved in language expression and comprehension. In other cases, known as primary progressive aphasia, the condition gets worse slowly over time, and patients may develop dementia-like symptoms.
Estimates vary, but between 1 and 2 million Americans have aphasia, and almost 180,000 develop the disorder annually. Although it’s most common in older people, who are at greater risk of health events like strokes, it can affect people at any age. “It can be catastrophic,” says Swathi Kiran, director of the Aphasia Research Laboratory at Boston University. “Not being able to say a full sentence, or saying a sentence where the words sound garbled, is extremely frustrating.” It can also cause a person to feel embarrassed or ashamed, “so they would rather choose not to speak anymore than to say something and feel embarrassed about it,” Kiran says.
That can lead to social isolation, one of the most emotionally painful potential consequences of aphasia. Patients often know exactly what they’d like to say but may have no way to express it, says Kiran. People with aphasia may need to change their lives dramatically to cope, such as giving up their careers and finding new ways to communicate with loved ones. “I think the most important thing for families to understand is that despite the fact that they don’t seem like themselves, they still are,” says Brenda Rapp, a professor in the department of cognitive science at Johns Hopkins University. “Trying to navigate those often dramatic changes can be really difficult. They really need a lot of support.”
Can people recover from aphasia?
Although there’s no cure, in sudden onset aphasia, speech therapy can improve patients’ ability to communicate over time. Rapp says that in patients who suddenly develop aphasia, the biggest improvements often happen in the immediate period after the disorder first appears, but patients can continue to improve even years later. “I’ve never actually worked with someone who, if you work concertedly with them, won’t continue to improve,” says Rapp.
How well patients recover depends on factors like the severity of the disorder and the way it developed. For some patients, it can even go away completely—like it reportedly did after about a week for Game of Thrones star Emilia Clarke, who developed the disorder after having a brain aneurysm. In other cases, however, patients will continue to cope with symptoms for the rest of their lives. Symptoms in people with primary progressive aphasia, for example, typically continue to get worse, says Kiran.
Kiran says there are also promising clinical trials for aphasia, including treatments that stimulate the brain with electricity. Research suggests that treatment can even slow down aphasia in patients with progressive disorders, which is why it’s key that people with aphasia and their loved ones don’t give up, says Kiran. “It’s long and hard, but there’s definitely a road to recovery,” she says.
How to support someone with aphasia
Patience is paramount. Kiran recommends slowing down when speaking with someone with aphasia and repeating yourself, if necessary, to make sure that the person understands what you’re saying. She suggests giving them a chance to communicate with you, and encouraging them to draw or use gestures can reveal other modes of communication that may be easier than speech. “Make sure that the person doesn’t feel rushed, because when they feel under pressure, the aphasia definitely gets worse,” says Kiran.
Consistently communicating with someone who has aphasia can be essential for helping them to improve and to ward off social isolation. “Every practice they get—whether it’s watching TV together, or drinking a cup of coffee and chatting—is therapy for the brain, and it definitely impacts the outcomes in a positive way,” says Kiran. “What family members have to understand is that they need to support the patient through the recovery process, and never give up.”