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University researchers address aphasia, an ‘invisible’ disability

University researchers address aphasia, an ‘invisible’ disability

University researchers address aphasia, an ‘invisible’ disability
May 05
09:48 2022

University researchers have started a new group known as The Aphasia Collaborative to raise awareness and provide resources for people with the communicative impairment.

Aphasia results from trauma to the brain, typically resulting from a stroke, that affects speech, writing and the way one understands written and spoken language, according to the Mayo Clinic.  At least 2 million people in the U.S. live with the condition, according to the National Aphasia Association.

TAC works to carry out a local vision of making North Texas an aphasia-friendly community. 

“TAC is truly a multi-institutional, multidisciplinary and interpersonal collaborative network that we’re trying to build by, for and with people who have aphasia,” said Gloria Olness, project director and associate professor in the College of Health and Public Service. 

TAC’s goal is to network people with aphasia with hospital discharge teams, post-discharge teams, clinicians, researchers, aphasia groups, religious leaders, community leaders and the general community to make sure people do not fall through the cracks after being released from the hospital, Olness said.

“That point of discharge is the vulnerable point,” Olness said. “That is the flexure point where we’re putting a lot of our focus and energy.”

Olness said it is estimated that 6,000 to 7,000 annual hospital discharges have coding identifiers for aphasia across Collin, Dallas, Denton, Rockwall and Tarrant Counties.

“We have an estimated 22,000 to 27,000 people living with aphasia in our region,” Olness said. “[An estimated] fewer than 200 are currently accessing the post-discharged supports and services available to them.”

The feeling of being discharged with aphasia without access to resources is like being “dropped off a cliff,” said Carol Dow-Richards, whose son was diagnosed with aphasia after experiencing a stroke in 1995. The quality of life of those living with the condition is drastically impacted and community awareness of the condition is “pathetically low,” Dow-Richards said. 

“If you have aphasia and go out in public […] they often think that you are impaired with drug use — they might think you are drunk [or] they might think you are not very smart,” Dow-Richards said. “The impact on your psyche to go out in public and be treated less than is almost just as bad as having aphasia. These people often become very reclusive.”

Dow-Richards and her son co-founded the Aphasia Recovery Collective in 2013 to bring together people with aphasia, as well as their family and friends. ARC’s Facebook page has over a quarter-million users, Dow-Richards said.

Aphasia reverberates through all of the networks of life, even when only one person develops the disorder, Olness said.

“The good thing [is] that there [are] hope [and] resources,” Olness said. “There are rehabilitation and support services to get [people who have aphasia] engaged back in life. There are supports and services for their friends and family on strategies and ways to communicate with someone and to know what is in their head, even though they have aphasia.”

TAC has sent out the first wave of communications to 40-45 clinicians who administer post-discharge teams and people with aphasia in Dallas-Fort Worth area to encourage others to join the organization. The second wave will cater to the Hispanic community, said Catalina Assad, a speech-language pathology graduate student.

Assad will collaborate to help TAC translate the solicitations to Spanish. Assad said Hispanics are largely underserved when it comes to the health care system and she sees TAC as a step toward filling this gap.

“Aphasia impacts not only the patient, but the family,” Assad said. “The [Hispanic] minority community is family-oriented and so that’s huge for us because at one point, if you’re not given the correct material or information from your doctor, you are left in the dark.”

TAC needs to prepare itself to serve people with aphasia regardless of their background, identity, socioeconomic status, language or culture, Olness said. It is a matter of “learning how to build those bridges,” to create a pathway to inclusivity and establishing welcoming communities for those with “invisible disabilities,” Dow-Richards said. 

“As a society, we build ramps and open doors for people who have physical impairments,” Olness said. “We need to build communication ramps and open communication doors for people who have aphasia, so they can go back and reintegrate into society.”

Featured Illustration By Miranda Thomas

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Jeffrey Ruiz

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