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Easing the Long Goodbye
An innovative center at the U takes a creative, comprehensive approach to treating Alzheimer’s.

by Brett Hullinger

Olin Campbell is a smart man: undergraduate degree in psychology from Yale; master of divinity from Union Theological Seminary in New York; doctorate in educational psychology from Stanford. But right now, on a cloudless day in early summer, the 61-year-old university professor is hung up on a question about how long he’s lived in Utah.

“Three years,” he says, finally. “Something like that.”

“Eight,” says his wife, Janet, seated next to him on the living room couch in their Orem home. Olin—trim, energetic and dressed in a dark suit, white button down shirt, and muted yellow tie—lets out a long, boisterous laugh, genuinely surprised by the error.

“He’s the storyteller,” says Janet, reaching out to touch her husband on the sleeve. “I’m the verification.” They laugh together. This, after all, was a harmless miscalculation, the type likely to surface often in a marriage that has lasted nearly four decades. But Janet’s job as the storekeeper of the couple’s collective memory grows ever more important as Alzheimer’s disease slowly tightens its grip on Olin’s brain.

The cold reality of Alzheimer’s disease is that there is no definitive cause, no surefire means of diagnosis, and no cure. It is a disease that, because of its degenerative nature and unpredictable duration, is called “the long goodbye.” Patients who get it are often incapable of making important decisions about their care, even while they navigate a health-care system that is largely unprepared to handle them. These are the challenges facing the University of Utah Center for Alzheimer’s Care, Imaging, and Research (CACIR).

The center, established in 2005, is on the cutting edge of diagnosing and treating the disease. It is also at the forefront of providing education to patients, physicians, health insurers, family members, and other caregivers. In its two short years of existence, the center has become the preeminent Alzheimer’s resource in the Intermountain West. Good thing, too, because the region is bracing for the largest increase in Alzheimer’s cases anywhere in the country over the next two decades.

Norman Foster, director of CACIR
“This is ground zero for aging and Alzheimer’s research,” says Norman Foster, director of CACIR and a senior investigator for the U’s Brain Institute. Foster, 56, an impressive presence at 6’5”, points out that Utahns enjoy one of the highest longevity rates in the country. And the state has a higher than average proportion of its population either in or about to move into the older age category. Couple that with the region’s explosive population growth and you have an area at high risk for Alzheimer’s cases. “It’s a great place for me, as someone who’s interested in providing top-notch medical care,” says Foster, “because there’s so much to be done.”

Part of what needs to be done, according to Foster, is to better equip primary care physicians to handle Alzheimer’s patients. As it stands, doctors in the field are at a clear disadvantage when compared to treating other life-altering illnesses. With cancer, for example, a vast support network is already in place for doctors and patients. There is a broad range of specialists, cancer centers, and educational resources at the ready. Not so with Alzheimer’s.

“I think that it is kind of a lonely thing for primary care physicians to be confronted alone by such a devastating, severe, progressive disease,” says Foster. “There is no other example of such a severe illness that, often, primary care physicians are expected to handle on their own. As a result, they often feel uncomfortable. Or they do not have confidence in what they’re doing, and feel scared, really, to open what to them is a Pandora’s box of problems that they’re not equipped to handle.”

Through phone consultations, training sessions, lectures, and other services, the staff at CACIR ensures that its renowned expertise gets transmitted to doctors who can implement it on the front lines.

For those patients who are referred directly to CACIR, an innovative, multi-disciplinary team approach to dementia care awaits. Patients are first seen by internationally recognized neurologists using some of the country’s most advanced brain imaging methods. In addition to traditional MRI scanners, the center uses highly sensitive positron emission tomography (PET) scanners to create pictures of the brain’s biochemical processes. Instead of simply generating a snapshot of the brain, the PET images show how it is functioning and the specific areas where brain activity is low or high.

After meeting with a neurologist, patients at CACIR receive a comprehensive evaluation from a neuropsychologist. Technicians administer a series of ability tests designed to gauge a person’s cognitive strengths and weaknesses. When paired with brain images, doctors can further define the patient’s mental health status. The goal is to reach what has historically been an elusive target: an accurate diagnosis of Alzheimer’s.

“We are improving our diagnostic accuracy all of the time,” says Foster. “Our current criteria for Alzheimer’s disease… [is up to] 90 to 95 percent accurate.”

For many Alzheimer’s patients, a definitive diagnosis would simply lead to a drug prescription, and not much else. At CACIR, a licensed clinical social worker specializing in dementia takes over. The social worker connects patients and their families to community services, provides referrals for respite care, helps manage safety and behavioral issues, and is generally an advocate for caregivers.

One truly innovative aspect of the center’s care model, says Foster, is incorporating health education into every clinic visit. The center’s health educator ensures that patients and families have the latest Alzheimer’s information at their fingertips and the resources to incorporate that information into daily living. By educating caregivers, Foster hopes to narrow what he says are “significant gaps between what can be done for people with Alzheimer’s disease and related disorders, and what is actually being done for them.”

The final component of the CACIR care model is a support staff dedicated to helping patients manage and coordinate their care with various providers and insurance companies. Among the staff is an appeals advocate who helps patients dispute insurance claim denials. To date, 80 percent of the appeals submitted by CACIR have been paid by the insurers.

In simple terms, the purpose of this multidisciplinary approach is to treat the patient and not the disease. That concept is in the center’s motto: “Care Without Compromise.” Using this as its guiding principle, the center evaluated 339 patients for memory disturbances and dementia in 2006. One of them was Olin Campbell.

Olin and Janet Campbell
“You just can’t go into the bad part,” says Janet. “You just deal with where you are.”
One day in 2005, Janet Campbell paid her husband a routine visit on the campus of Brigham Young University, where Olin was a professor of instructional psychology and technology. She wasn’t prepared for what came next. “I remember walking into his office, and he said, ‘I’ve been researching on the Internet, and I have early onset Alzheimer’s.’ I just looked at him like, ‘What are you talking about? Forgetful is not necessarily Alzheimer’s.’ ”

But it was more than being forgetful, although for a time leading up to that day, Olin too had tried to dismiss his memory lapses as typical signs of getting older. “At first, like everybody else, I said, Well, it’s nothing,” Olin says. “When I realized it really was something, I went and talked with the department chair and others and said, ‘Hey, I’m really having some problems.’ ”

In the fall of that year, a friend of Janet’s came to her with a newspaper article about Norman Foster and CACIR. Janet set about getting the necessary referral from Olin’s physician, and in January of 2006, they met with Foster for the first time. After some extensive testing, they got their diagnosis: probable Alzheimer’s.

“With this disease, they only say probable Alzheimer’s,” Janet explains, “because the diagnosis is not definite without autopsy.” “And we didn’t want to do that yet!” Olin quickly adds. Watching Olin deliver a perfectly timed one-liner, he appearsat least to the untrained observerto be the picture of health. He is attentive, engaged, and cheerful. He uses words you’d expect from a university professor: circuitously, palliative, amelioration. He recounts the story of how he met his wife—at Sequoia National Park while the two were working for a Christian ministry programwith affection and detail. The only real hint of a problem is his tendency to repeat certain thoughts as if for the first time.

But he knows changes are coming. Olin talks frequently of transitions and is resigned to the fact that it won’t get any easier. “My observation of my own transition is that it is definitely going downhill,” he says. “My sense is that there is no known cure, there’s no way to reverse it, there’s no way to halt the changes as of now. And so the best we can do is to say we’ll track it, we’ll know where we are, we’ll make plans ahead of time so that when the next stage comes, we’re prepared. We’re giving it everything we’ve got.”

But they’re not doing it alone. While Olin talks, Janet clutches a folder stuffed with brochures, pamphlets, and magazines—resources provided by CACIR during their last visit, in May of this year. “They [the CACIR staff] have connected us with the Alzheimer’s Association,” Janet says. “They’ve connected us with support groups. All of those things are very helpful. Being able to be connected to other people, as well as information, is empowering.”

Olin and Janet Campbell
Mostly, they’re trying to stay positive and to deal with the here and now.
Olin is equally impressed with the attention they’ve received. “I would say we’ve had astounding support and follow-up,” he says, “way beyond anything I would have ever expected to happen. [The care] is far more inclusive in terms of a rangenot just saying, ‘Okay, we’re going to look at it as a disease,’ but much more broadly to say, ‘We’re looking at this as an issue of family life.’ ”

Family life won’t ever be quite the same at the Campbell household: Olin’s condition forced him into unplanned retirement this past May; he is no longer able to drive; Janet is looking at getting a job after being primarily a homemaker during her adult life; and the couple is considering a move across country to be closer to family.

Mostly, they’re trying to stay positive and deal with the here and now. They’re writing down Olin’s life story and visiting the grandkids more. They’re buying a global positioning system unit so Olin can find his way home if he gets lost. They’re living in the now, and when Janet finds herself worrying about what’s to come, she likes to remember a poem by farmer-conservationist-poet Wendell Berry called “The Peace of Wild Things.”

“It talks about how wild things do not have forethought of grief,” she says. “I think that’s wisdom. You just can’t go into the bad part. You just deal with where you are. I think that’s one of the things that is difficult about Alzheimer’s. People look to the end and say, ‘Oh my goodness, I’m so sorry for you.’ Well, I’m not sorry for me. I mean, anybody who can use the word palliative is not too far gone!”

Once again, laughter fills the living room of the Campbell home.

—Brett Hullinger is a freelance writer living in Salt Lake City.

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