INCLUDE CAREGIVERS IN REHABILITATION PLANS FOR PATIENTS WITH COMMUNICATION DISORDERS

FAYETTEVILLE, Ark. — Health care professionals should look at the whole family and use an individualized treatment plan for stroke victims with diminished communication abilities, says a University of Arkansas researcher.

"What’s missing in treatment is taking the temperature of the family system on a regular basis," said Barbara Shadden, professor of communication disorders. Shadden presented her response to a plenary session at a recent meeting of the International Association of Logopedics and Phoniatrics meeting in Montreal.

Shadden studies aphasia, a brain-generated defect in understanding and using language that often occurs in stroke victims. She runs the program in communication disorders on the University of Arkansas campus and has led a support group for stroke victims for the past 20 years.

Through her experiences and studies, she has noted that the sociological and psychological challenges for aphasic people and their families often take a back seat to other considerations.

"If you have a stroke, the doctor’s trying to help you live. The therapist is trying to help you to walk, to speak," Shadden said. "No one is saying, 'Where’s the spouse, where are the kids?’"

People with aphasia may experience fatigue, frustration, anger and depression while learning to cope with their diminished ability to communicate. Everyday communication with strangers becomes stressful, because people may not understand what is wrong or may become impatient with a person who speaks or comprehends slowly.

"Everything important that we do involves some kind of communication," Shadden said. "With friends and family, communication is the core of what allows us to be intimate."

Aphasic people may have trouble understanding words or phrases, so caregivers may have to rephrase sentences, repeat sentences or slow down their speech. Caregivers may have to listen carefully to understand words. The process of communicating can be tiring for both people, Shadden said.

"It makes some people less inclined to open the communication door," even when important matters need to be discussed, she said.

Shadden distinguishes between disease — with its biological effects — and illness, which can include the psychological and social aspects of the disease.

Traditionally, speech and language therapists treat the brain-damaged language behavior, or the disease, but that doesn’t always help aphasic patients learn to re-adjust to life after a stroke or cope with their illness.

"If therapy stops with the mechanics, then I haven’t helped that person get through her day," Shadden said.

Often aphasic people and their caregivers struggle over issues of control and independence. And the family as a whole rarely gets a "crash course" on dealing with issues that emerge in the wake of a stroke.

"What can develop is a lot of anger," she said.

Unfortunately in the case of aphasics, counseling isn’t always the best answer to coping with anger.

"Think about a person who can’t communicate well," said Shadden. "How do they communicate their feelings?" It takes a specialized psychologist, perhaps working with a speech-language pathologist, to address some of these issues.

"Ideally, for intervention in cases like these, you would like to have a team," Shadden said.

Unfortunately, health care is headed in the opposite direction — emphasizing efficiency, economy and functionality — that may result in visits that treat patients generically instead of individually.

"The bottom line is that our models of aphasia must be as comprehensive as possible, even if the complexity of the model is uncomfortable," Shadden concluded in her plenary response. "We must consider all players affected by aphasia, standing back from our mission as patient advocate long enough to recognize that more than one set of needs must be addressed."