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Barb Lawrence

Editor’s Note: This is one of a series of profiles of the Wisconsin Idea in action. See past profiles we have published.

Barb Lawrence: Cultivating better dementia care

As a family doctor and geriatrics specialist of 24 years, Mark Van Etten knows just how tricky treating the elderly can be.

Older patients often come in not with one problem but a whole host: osteoporosis coupled with heart disease, diabetes in addition to arthritis. Layer on the memory problems and dementia suffered by more than 16 percent of Wisconsin seniors, and providing adequate care becomes nigh impossible. “Dementia is not one of those things you do well in 10- or 15-minute time slots,” says Van Etten, who practices medicine in the tiny Northwoods town of Spooner, Wis.

Barbara Lawrence collaborates with staff at the United Community Center

Barbara Lawrence (center, wearing red), senior outreach specialist with the Wisconsin Alzheimer’s Institute at UW–Madison, collaborates with staff at the United Community Center (UCC), a nonprofit organization providing services to Milwaukee’s southside Hispanic community. The group, including Genevieve Kirk (left), program manager for UCC’s Latino Geriatric Program, and health research specialist Angelica Delgado Rendon (right), is refining materials and medical resource guides about Alzheimer’s disease and services provided by UCC for distribution to local primary care clinics that serve these people.

Photo: Jeff Miller

His colleague in Rhinelander, Chris Koeppl, agrees. “As an internist, particularly in a rural part of the state with a lot of retirees, I see a lot of older patients. So I see a lot of dementia,” he says. “But trying to sit them down and spend the requisite amount of time to best evaluate them is complex. It really can’t be easily done in a regular office visit.”

The situation sent both physicians in search of a better solution, and although their journeys took place nearly a decade apart, each eventually found his way to the Wisconsin Alzheimer’s Institute (WAI). Housed within the School of Medicine and Public Health, the institute conducts research on dementia and its most common cause, Alzheimer’s disease. But it also has an important mission to further public health and physician education, which is why the WAI helps doctors — especially rural ones such as Van Etten and Koeppl — launch specialized dementia diagnosis and treatment centers in their areas.

“My hope is that someday we may not even need the memory clinics because doctors will be diagnosing Alzheimer’s disease as everyday practice, just like diagnosing diabetes or hypertension.”

— Barb Lawrence

Once in place, these “memory clinics” not only serve as resources for local doctors who aren’t comfortable diagnosing Alzheimer’s disease themselves, but also as places where patients and families can learn more about dementia and get connected with community services. Since opening the doors of his clinic in January, Van Etten has seen such a demand for care that he’s already considering an expansion. And Koeppl’s Rhinelander clinic — which became Wisconsin’s first memory clinic outside of Madison in 1998 — is on target to have seen 1,000 patients by its 10th anniversary next year.

“The clinic has just taken on a value as a health care resource that I think people realize isn’t available everywhere,” Koeppl says.

Comprehensive dementia care may not be available everywhere in the state yet, but it will be someday if WAI outreach coordinator Barb Lawrence has anything to say about it. In fact, the former nurse-turned-educator looks forward to the day when she’s possibly out of a job.

“My hope is that someday we may not even need the memory clinics because doctors will be diagnosing Alzheimer’s disease as everyday practice, just like diagnosing diabetes or hypertension,” she says.

In the meantime, Lawrence continues to tend Wisconsin’s network of WAI-affiliated memory clinics, now 29 strong. Since getting its start in 1998 — the same year the state of Wisconsin, UW–Madison and the Helen Bader Foundation of Milwaukee founded the WAI — the clinic program has been steadily integrating early diagnosis of Alzheimer’s disease into the health care system through a combination of education and partnership building.

WAI director and School of Medicine and Public Health professor Mark Sager is responsible for creating the program, but “Barb is really the one who nurtures the network,” he says. Since joining the WAI in 2000, Lawrence has traveled tirelessly around the state, talking with health care professionals and community agencies, noting the needs of existing clinics and watching patiently for opportunities to start new ones. Her role includes helping connect interested doctors with communities that want memory clinics, tracking down rural health grants and other sources of clinic startup funds, and simply offering lots of encouragement.

Barbara Lawrence at work.

Barbara Lawrence (in red) and the Wisconsin Alzheimer’s Institute work with memory clinics throughout the state to improve Alzheimer’s disease treatment options and help physicians and other health care professionals learn best practices.

Photo: Jeff Miller

“Barb was very helpful, particularly in keeping me going,” says Van Etten of the challenging months he spent preparing to open his clinic in Spooner.

Every spring and fall, she and Sager also organize and run an all-clinic meeting in Madison. Funded by the Helen Bader Foundation, the gathering gives clinic staff from around Wisconsin a chance to hear about the latest research and treatments for Alzheimer’s disease, swap stories and best practices, and receive support and guidance.

“Our association with Mark and Barb is key,” says Koeppl. “Both of them are just tremendous cheerleaders.”

Yet, Lawrence is quick to point out that it isn’t all about her or the WAI, for that matter. Behind every successful memory clinic is an entire community of people, including the doctors, nurses, psychologists and social workers who carry out diagnosis and recommend treatment, and local Alzheimer’s Association chapters and other aging services groups, which both refer patients for evaluation and offer them and their families support once a diagnosis is made.

In other words, the WAI model of dementia care is intensely collaborative, and that suits Lawrence just fine. “What has kept me liking this job for so long is that it’s like how nursing was taught to me: We work together as a team,” she says. “The physician leads the team, but we all have something to contribute to the treatment of the patient.”

Lawrence first began teaching about Alzheimer’s disease 17 years ago, when she took a job with a predecessor to the WAI called the Wisconsin Alzheimer’s Information and Training Center. “There was a lot of work to do back then,” she says, “because Alzheimer’s disease was still considered normal aging at that time.”

Today, public awareness of dementia is much higher thanks, in part, to high-profile patients such as former president Ronald Reagan and actor Charlton Heston. More than 4 million Americans have now been diagnosed with Alzheimer’s disease, and 19 million people — including Lawrence herself — report that someone in their family has suffered from it.

Yet, despite all of this, 50 percent of Alzheimer’s cases still go unrecognized and, therefore, untreated, says Sager.

“Think about it: What would happen if we missed half of the cases of breast cancer, or half of the cases of hypertension or diabetes? It would be a major public health problem,” he says. “But for decades we’ve missed people who have cognitive impairment, the most common cause of which is Alzheimer’s disease.”

That’s why the clinic network is so critical, Sager adds.

“These clinics have influence within their health systems, and they become purveyors of new knowledge and research,” he says. “There’s no doubt that in five years we’ll have significantly improved treatment for Alzheimer’s disease, and this clinic network will us allow us to implement those treatments and do it faster.”

As Lawrence contemplates the future of dementia care, better treatment is uppermost in her mind, as well. Her hope is that Alzheimer’s disease will be more like diabetes someday: not curable perhaps, but treatable enough with medication that patients can live with it.

“I guess that’s my dream at this point — that it’s not going to be so devastating for people,” she says. “That they can die from something else without losing themselves.”

Written by Madeline Fisher