To Talk Again
UM program helps patients with aphasia
In December 2012, Jake Jacobsen had a stroke that left him with little ability to communicate. The 70-year-old retired smokejumper was hospitalized for 75 days and eventually diagnosed with aphasia.
Aphasia, ancient Greek for “speechlessness,” is a language disorder caused by damage to the language centers of the brain. In Jacobsen’s case, he couldn’t express himself verbally, and he couldn’t understand what other people said to him. But because aphasia doesn’t affect intelligence, Jacobsen was still quite aware of the world around him. He was the same person as before, but he was trapped inside his own body.
Jake’s wife, Kristi, was terrified. Jake went through rehabilitation at the hospital, but eventually they were told there was nothing more they could do for him. It appeared to be a hopeless situation – that is until a speech therapist at the rehab center suggested the couple look into a new, intensive therapy program at UM. And so in June 2013, Jake and Kristi met with clinicians at UM’s Big Sky Aphasia Program.
“I had never heard of it,” Kristi says. “But when we got there, they spent a fair amount of time with us. They did a lot of testing with Jake and said he was a perfect candidate for this program. We started regular therapy at BSAP in the fall of 2013.”
As Jake began spending time in the therapy program, words came back to him. Little by little, Kristi saw the communication barrier begin to crumble.
“When someone you love has this happen to them, you just want to do everything you can,” Kristi says. “I couldn’t accept the, ‘Oh, he’s not going to get any better.’ Well, I just don’t accept that. And I’m glad I didn’t.”
Aphasia can present in curious ways. A person with aphasia might be able to talk, but the words come out as gibberish. The individual might say one thing but actually mean the opposite. They might put a full sentence together but not be able to engage in conversation.
“Some folks struggle with just retrieving single words,” says Catherine Off, director of the Big Sky Aphasia Program and an assistant professor in UM’s Department of Communicative Sciences and Disorders. “They might know everything about a tangerine, but they can’t think of the word ‘tangerine.’”
The first version of BSAP was developed in 2011 by Annie Kennedy, a UM clinical educator at the time, who was exploring clinical approaches to aphasia. When Off took a position at UM, she and Kennedy continued developing and expanding the program. Kennedy moved out of state recently, and Jenna Griffin, a former graduate student in the department, joined BSAP as a clinical educator and co-director. At the DeWit RiteCare Speech, Language and Hearing Clinic in the basement of Curry Health Center, Griffin and Off facilitate one-on-one sessions between clients and clinicians.
“We sometimes do what’s called semantic feature analysis,” Griffin says. “So if you take the example of tangerine, we might have a client try to describe aspects of a tangerine: Where does it grow? What do you do with it? And through this you strengthen those verb and noun networks.”
BSAP also consists of small group sessions with four or five participants, along with focused one-on-one conversations between the clients. They take breaks between sessions to avoid burnout, and they often end the day with a game of cards or some social activity that serves as a breather from all the focus on language skills.
In addition to in-person therapy, BSAP offers weekly tele-rehabilitation, providing help via video chat for clients in rural areas who are unable to be physically present – something of major importance for a state like Montana.
BSAP’s approach is based on a new comprehensive model, using intensive therapy that is administered in shorter periods of time than is done during standard practice. One of the most important aspects of this approach is that it is specifically tailored to the client. When Kristi and Jake Jacobsen came to the clinic, for instance, the clinicians took time to learn about his interests and his goals.
“Jake’s an avid Griz fan,” Kristi says. “He’s a hunter and likes to work in the yard, so all those things were integrated into his therapy. The idea is that if he’s going to make gains in therapy, he’s going to make gains in subject matter that he can use socially.”
She laughs and adds, “And I know that seems so obvious, but let me tell you, on the other side of the world in rehab units, that isn’t necessarily the case.”
BSAP holds two intensive programs each year – a longer one during the summer that includes recreational and social outings and a mini-intensive in the fall. If the client has an exciting life event, the clinicians will find a way to use it.
UM’s aphasia program is unique for another key reason. It also provides counseling, education and training for caregivers. Studies show that clients who have solid support networks will continue improving to a greater degree than those who do not.
“Caregiver counseling gives them the private space to vent all the stuff that is going on behind the scenes, that they would never want to share with their loved one – the parts of caregiving that are hard,” Off says.
During the fall, spring and summer terms, BSAP also offers a free aphasia community group on Wednesdays from 11 a.m. to noon for anyone with aphasia, even if they’re not enrolled with BSAP. “Our aphasia group helps people to see that there really is a community here,” Off says. “They are not alone.”
Victoria Hinther enrolled in speech-language-pathology studies because she wanted to help people. BSAP offered her a focus for her passion.
“I’ve fallen in love with working with aphasia,” she says. “Everyone is different, and I think it’s really cool to figure out what they each need to be successful in communication.”
Hinther just started graduate school this fall, but she was able to get a jumpstart by working under Off’s mentorship in the BSAP lab as an undergraduate researcher earlier this spring. During the summer session, she accompanied BSAP participants to the Museum of Mountain Flying and the Boone and Crockett Club. These experiences gave her a chance to learn how to sharpen her skills as a clinician. Most of all, she learned it was important to gain her clients’ respect.
“When we first start [the program], we do some assessments to see where their skills are,” she says. “But it’s more than that. Somebody who hasn’t been able to express who they are in a really long time – I like to help find that person again.”
Graduate students also make the program financially viable. Most people living with aphasia end up running out of insurance coverage, which often makes private practice options cost-prohibitive. BSAP costs about $2,100 for five weeks of therapy (48 hours, in all) and $2,500 for the summer intensive, while other programs across the country can range up to $40,000 for five weeks.
The quality of care doesn’t suffer because of low costs, either: Graduate students usually outnumber clients, which means clients get one-on-one attention. In addition, students are required to stay abreast of the latest research to provide evidence for the treatment approaches they use during BSAP.
“There is no clinician burnout,” Off says. “Every semester we have new students, so every semester we have a fresh set of eyes, a new approach and new enthusiasm and creativity.”
Last fall, the graduate students and directors began collecting data from the BSAP programs.
“We are tracking patient outcomes based on speech pathology tests,” Off says. “The outcomes focus on whether or not the patient’s language is getting better and whether or not the patient’s psychosocial well-being is improving. We are hopeful that the BSAP program will also help them to better cope with living with aphasia. We also track graduate student clinician outcomes to evaluate how the intensive model influences student learning. No other clinical researchers are currently examining clinician outcomes in this setting.”
At the heart of BSAP’s philosophy is neuro-plasticity – the idea that the brain is capable of remarkable change. If a person with aphasia isn’t making progress, you don’t stop trying – you change your approach. When Kristi Jacobsen first arrived with Jake, this was one of her biggest revelations. It was the hope she was looking for.
“Jake and I can have a conversation now,” she says. “Are there gaps? Absolutely. But BSAP has given me techniques for when we hit a block. He has made huge, huge improvements. I’m sorry that we are in this situation, but I am so grateful that Jake can participate in this. He wouldn’t be where he is today if it weren’t for this program.”
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