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Recently, the family of “Die Hard” star Bruce Willis announced in a joint statement that he was stepping away from acting due to a diagnosis of aphasia—loss of the ability to effectively communicate.
When the news broke about Willis, I was preparing to travel to the Annual Neurology Conference. There was a low buzz throughout the event about what the diagnosis might mean. By definition, aphasia is a symptom, not a standalone condition. Aphasia can affect our ability to:
- Speak
- Understand conversation
- Speak and understand conversation
There are many types of aphasia, but the most common ones we see are Broca’s aphasia, Wernicke’s aphasia, and Global aphasia, usually in the context of a stroke. After a stroke, approximately 33% of patients develop aphasia and symptoms can be acute or chronic, depending on the severity and location of the stroke.
But with neurodegenerative conditions, certain areas of the brain lose function more gradually. In these cases, the patient may be diagnosed with primary progressive aphasia (PPA), which interferes with speech and comprehension. Approximately 60-70% of PPA cases are caused by frontotemporal lobe degeneration and 30-40% are caused by Alzheimer’s disease.
Developing aphasia can take a major toll on a person’s mental health and quality of life. Though some forms of aphasia can resolve fully, most patients and their families must learn to live with a “new normal” for communicating.
Every patient’s aphasia experience is different, so every patient needs a personalized care plan. A specialist can investigate the cause of your aphasia symptoms and help you with strategies, tools, and treatments to communicate and maximize quality of life.
Diagnosis of neurodegenerative aphasia.
With age, we naturally lose brain cells over time, although some brain areas regenerate throughout our lifetime. Occasional forgetfulness, mood, and cognitive changes are a normal part of aging; but when change is dramatic, severe, or starts to interfere with daily life, we start to suspect neurodegeneration.
At our neurology clinic, the diagnostic process starts with determining what is normal for a patient’s age and for their personal history — for example, have they always been silly, forgetful, or irritable, and it’s noticeably worse than before?
Then, we go through a series of exams to understand what might be causing your symptoms. First, we do a neurological exam with blood work to identify or rule out conditions that can cause similar symptoms including:
- Low thyroid stimulating hormone levels
- Mental health conditions such as anxiety or depression
- Nutrition deficiencies, such as low levels of vitamin B12, folate, or thymine
- Sexually transmitted infections such as HIV or syphilis
- Sleep apnea
- Boston naming test: We’ll ask you to name items that we show you, moving from vague to specific terms. For example: Hand, finger, fingernail, then cuticle.
- Immediate and delayed recall: A provider will ask you questions such as the date, time, your name, your child’s birthday, and so forth. We might ask the same questions more than once or tell you information then ask you to repeat it later.
- Montreal Cognitive Assessment (MOCA): This 10-minute test is a check of basic cognitive function. We’ll give you several words to remember for a short period of time, as well as tests to measure your attention, abstract reasoning, and ability to identify pictures of common objects or animals.
- Mini Mental Status Exam (MMSE): This is a slightly longer version of MOCA, including more questions and elements.
- Neuropsychiatric testing: This is the gold-standard for dementia assessment. We will ask you to copy a drawing of a unique image, then redraw it a few hours later by memory. This assessment provides a baseline for visual spatial processing, cognitive function, and mood (such as frustration).
Another step in diagnosis is brain imaging. With an MRI of the brain, we can see where atrophy has occurred, which areas of the brain are affected, and which areas of the brain were spared. Combining the images with your functional test results, we can develop a personalized treatment plan to strengthen unaffected areas of the brain and give you treatments and strategies to express yourself.
Treatment options.
Team care is essential for living well with aphasia. MedStar Health brings together a large team of therapists, neurologists, social workers, and behavioral health experts to inform each patient’s care plan.
Behavioral health support.
It can be extremely frustrating to be unable to express yourself or understand others. These concerns can lead to anxiety, depression, anger, and isolation—which can make aphasia symptoms worse.
All of our patients have access to behavioral health experts who can help identify and treat emotional conditions. In some cases, caregivers benefit from these services, too.
Medications.
Today, there are no drugs specifically designed to treat aphasia or clear treatments for dementia. There are, however, medications to help slow the progression of symptoms and address underlying neurodegenerative causes, such as in Alzheimer’s disease:
- Aricept: This drug prevents the breakdown of acetylcholine, a neurotransmitter that helps regulate communication between nerve cells in the brain. The goal is to improve memory, awareness, and executive brain functions such as speaking.
- Rivastigmine: This drug increases the level of acetylcholine in the brain, improving cognition by allowing nerve cells to communicate better.
- Aducanumab: This latest Alzheimer’s drug to hit the market is quite controversial. Its goal is to reduce amyloid—protein buildup—in the brain, which may not help patients with existing brain damage. It was approved by the U.S. Food and Drug Administration with limited data to prove its benefits (though data is being gathered). And it’s very expensive, making it tough to justify for long-term use.
Speech-language therapy.
In our specialized speech-language therapy program, we identify real-life goals such as returning to work or resuming your favorite hobbies. We will design your therapy plan around these goals.
For some types of aphasia, regardless of the cause, we can train healthy areas of the brain to make up for deficits of neurodegeneration. For others, we can teach you to use specialized tools and devices to augment communication such as:
- Tablets or special phones for text-based communication
- Cards that indicate specific needs, emotions, or actions
Change management.
With neurodegenerative conditions, there is a fundamental tension in family dynamics between independence and safety. Communication difficulties increase the risk of adverse events in the event of a house fire, fall, or sudden illness.
Every few months, the care team, family, and patient should meet to discuss current needs, what’s changed, and what changes are expected. Changes at home should follow with how best to maintain a patient’s independence and keep them safe. There’s no one-size-fits-all approach, and families will have cultural, religious, and resource considerations. We try to help make a plan to keep everyone including your health care team connected.
Support groups.
Difficulty communicating and thinking can feel very isolating, and spending time with people who understand your emotions can be cathartic. Patients, caregivers, and families are welcome to attend our variety of support groups, based on your needs.
The future of neurodegeneration-related aphasia treatment.
Looking forward, the future is bright. Ongoing research is moving toward earlier identification of neurodegeneration associated with aphasia. The neurology community is challenged to find biomarkers—indicators in the genes, brain, blood, or body—that a person has early signs of or is at increased risk for a neurodegenerative condition. We can do this already for some conditions, such as amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease) and Alzheimer’s disease.
Though there is not yet a way to eliminate our risk of neurodegeneration as we age, we can work to keep our brains healthy. Research shows that eating a nutritious diet, getting regular exercise, and keeping our minds sharp through social interaction and cognitive tasks—like doing crosswords or reading—can reduce the risk of dementia.
With aphasia, patients face a combination of cognitive and emotional challenges. For some, it is a temporary concern; for others, it becomes a new normal. Seek care when you or loved ones first notice symptoms of aphasia—the earlier a cause is identified, the faster we can begin treatment.