There are more people living with Aphasia than we thought: How to change policies, procedures & care

After Gordon Wells’ stroke, his world changed completely.

Not only was he paralyzed on his right side, he was no longer able to talk, read or write. His daughter, Sarah and her husband, reeled with the adjustments of Gordon’s new life with aphasia, which affects more than one in three stroke victims.

Despite having all of his intellectual and emotional abilities, aphasia isolated Gordon – 61 years old, living in Odessa, Texas -- preventing friends, family, and the majority of his healthcare team from knowing how to communicate with him.

As Gordon moved into his daughter’s home for full-time assistance, all faced a heavy future. Sarah recalls, “My dad felt guilty. Everyone felt uncertain. After my dad moved in, we felt stuck, afraid and just thrown to the wolves. I was preparing to quit my job to care for my dad full time. Everything seemed so hopeless.”

Not knowing about aphasia until it impacted them personally. Both Gordon and his family felt alone, left to cope with the impact of aphasia on their relationship, employment, emotions, daily interactions and activities.

Now, we know that Gordon and Sarah are much less alone than we originally thought. New data published by Aphasia Access suggest that aphasia could be up to four times more prevalent than earlier projections. By taking into account the multiple conditions that can lead to aphasia in addition to stroke – namely, traumatic brain injury and brain tumors – we have a better understanding of its impact.

Due to the difficulty of tracking aphasia cases, earlier research about the prevalence of the condition was unclear; estimates indicated that as few as one million Americans struggled with aphasia.

Today, by looking at multiple data sources and etiologies, we estimate that between two and a half to four million Americans struggle with aphasia.

This new estimate has radical implications for healthcare administrators in a variety of settings -- especially on the cost and quality of care. Compared to those with stroke alone, patients with stroke and aphasia had approximately double the number of physician visits and overall healthcare costs per year and were associated with higher hospital readmission rates.

Although the Joint Commission estimates that 60-70% of hospital errors are caused by ineffective communication between patient and provider, most hospital administrators and healthcare workers have not received tools to address this epidemic crisis.

Today, too much of aphasia care is delivered in a way patients with aphasia cannot understand. Communication is a two-way street; caring nurses and others will continue to fall short without training for successful interactions. Speech-language pathologists (SLPs), already trained in communication-access skills, need empowerment from administrators to mentor family members and allied staff in communication strategies and environmental adaptations.

With as many as four million people with aphasia in the American healthcare system, this is a call for healthcare administrators to change the policies, procedures and resources allocated to treat aphasia in all settings. Not only can this improve quality of care, it can reduce medication errors, extra costs, extended hospital stays, poorer outcomes, lower recommendation adherence, lower patient satisfaction, deaths and lawsuits.

Emergency departments and acute care: Allocate time and resources for training staff on adaptive communication techniques. The onset of a stroke, TBI or brain tumor can be terrifying for the patient and family. Helping providers and family understand the aphasia diagnosis and protocols to communicate with stroke, TBI and other patients with communication barriers will offer hope and better outcomes from the beginning.

Rehabilitation: Empower frontline staff to prepare patients and families for ongoing life with aphasia.
Rehabilitation administrators should implement procedures for healthcare staff to support adaptive communication strategies with adults with communication disorders and model those interventions for allied staff, families and other communication partners. SLPs should be empowered to write person-centered goals, preparing individuals and their families for life after rehabilitation therapies end.

Long-Term Services: Train long-term care staff on communication support methods so residents with aphasia can fully participate in their new surroundings. Without an understanding of aphasia, care teams often presume that people with aphasia have cognitive disabilities. That often leads to inappropriate treatment or segmenting patients away from social activities that can help ward off depression and social isolation.

Thankfully, Gordon and Sarah have hit a new stride living with aphasia. Gordon is surrounded by a community that understands aphasia and is committed to help him fully participate in meaningful interactions and activities. Sarah has returned to work, finding balance in her life.

Now, it’s up to us to create the same pathway for the millions of others coping with aphasia. Too many are at risk of being misjudged, misunderstood, and left with the emotional toll of not having a say in the direction of their own lives.

Elizabeth Hoover, Ph.D., CCC/SLP, BC-ANCDS, (Massachusetts) serves on the board of Aphasia Access. She is a Clinical Associate Professor of Speech, Language and Hearing Sciences and the Clinical Director of the Aphasia Resource Center at Boston University. Dr. Hoover holds board certification from the Academy of Neurologic Communication Disorders and Sciences (ANCDS). She has worked with individuals with aphasia across the continuum of care and has contributed to international research and grant programs to improve aphasia care.

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