During her long journalism career, which included producing The Newtown Bee’s quarterly Health Monitor, former associate editor Kaaren Valenta learned a lot about many conditions and maladies affecting individuals here in town and across the globe. But she never envisioned herself in retirement, becoming the primary caretaker for an elderly aunt who was afflicted with one of the most rare forms of aphasia.
June is National Aphasia Awareness Month, and according to the National Aphasia Association (NAA), the condition creates impairment of language, affecting the production or comprehension of speech and the ability to read or write.
Aphasia can be so severe as to make communication with the patient almost impossible, or it can be very mild. It may affect mainly a single aspect of language use, such as the ability to retrieve the names of objects, or the ability to put words together into sentences, or the ability to read, the NAA website states.
More commonly, however, multiple aspects of communication are impaired, while some channels remain accessible for a limited exchange of information. It is the job of professionals to determine the amount of function available in each of the channels for the comprehension of language, and to assess the possibility that treatment might enhance the use of the channels that are available.
Susan Wortman-Jutt, MS, CCC-SLP, a speech-language pathologist with the Outpatient Speech Department at Burke Rehabilitation Hospital in White Plains, N.Y., recently spoke with The Bee regarding the condition. In her position, Ms Wortman-Jutt evaluates and treats adults who have acquired communication and swallowing disorders as a result of stroke and brain injury.
She said aphasia is almost always due to injury to the brain — most commonly from a stroke, particularly in older individuals. But brain injuries resulting in aphasia may also arise from head trauma, from brain tumors, or from infections.
The speech-language pathologist said awareness about aphasia was unfortunately far below most people’s radar until the assassination attempt on US Representative Gabrielle Giffords, who acquired the condition during recovery from a gunshot that left her with a severe traumatic brain injury.
“I think it is literally a silent population — these are often people who cannot advocate for themselves,” she said. “The other thing is that there is an element of embarrassment. If they cannot communicate, they hesitate to go out into the community to advocate for themselves.”
Ms Wortman-Jutt said Rep Giffords has spoken on occasion about having aphasia, although her primary advocacy is related to gun control.
“Unfortunately it takes something like that happening to a public figure to boost the awareness of something like aphasia in the public eye,” she said.
She said in situations where a person has suffered a stroke or traumatic head injury — typically on the left side of the brain — the onset of aphasia is likely to be immediate. That is because the left side houses the brain’s language center.
“They immediately discover they are having trouble communicating, or that people are having trouble understanding them,” she said. “But there is one form of the condition, called primary progressive aphasia, that is very different; it is more related to a kind of dementia.”
Ms Wortman-Jutt noted that in almost all cases, the individual is not cognitively affected.
“Intellectually, they are not impaired at all — it’s just their ability to communicate that is impaired,” she said.
This was the case for Ms Valenta’s only surviving aunt, Alice, who as a widow, maintained an active lifestyle living on Cape Cod and working as a bookkeeper until she turned 80.
“She would dig herself out in the winter, and she would drive herself to work,” Ms Valenta said. By the time she reached age 85, however, Ms Valenta noticed that her aunt was progressively starting to forget certain words.
Over the course of the following two years, Alice completely lost her ability to speak and began losing her ability to write, although she continued living alone and driving. After an injury to her hip, she lost the ability to drive and the doctors evaluating her determined she could no longer live independently.
Now in a skilled care facility on the Cape, Ms Valenta said her now 90-year-old Aunt Alice is still very functional, although the aphasia has completely rendered her unable to communicate verbally.
“She still seems to understand everything you say to her,” Ms Valenta observed, “and for the past few years I haven’t seen any more evident deterioration.”
After handling her aunt’s affairs over the past decade, the former Bee editor had a couple pieces of advice for anyone who learns a loved one is suffering from aphasia.
“When she first started losing her speech, I did flash cards for her with common sentences — she became extremely frustrated when she couldn’t get her point across. And you can’t talk down to them because they are still all there,” she said. “They get very angry.”
Ms Valenta also recommends an immediate relative obtains both a power of attorney for the individual, as well as a health care proxy.
“Get that while they are still able to communicate, because if you take someone before a judge who can’t talk, they likely won’t want to issue a health care proxy,” Ms Valenta said.
Ms Wortman-Jutt said that outside the degenerative form, aphasia is not a progressive disease.
“When people have a stroke or brain injury, unless there is a second event, their aphasia will not get worse — it may stay the same, or there will be some short or long-term recovery to some extent,” she said.
Once an individual is diagnosed with aphasia, the person will receive an evaluation from a professional like Ms Wortman-Jutt. Then, they will likely spend recovery time in a rehabilitation setting, or receive a plan of care for rehabilitating at home.
“Speech therapy is the most immediate and effective way to help an individual with the condition,” she said. “There are also computer applications — with home exercises people can do. But it doesn’t replace the kind of feedback you can get from a speech pathologist. The best way to promote recovery is to have speech therapy because a professional has the knowledge about particular kinds of aphasia and how to best treat it.”