Lisa Gwyther had no inkling that she would spend her career supporting families affected by Alzheimer’s when she started as a social worker at Duke Medical Center in the late 1970s.
The national Alzheimer’s Association hadn’t yet formed, and awareness of the disease, which causes severe dementia and has no known cure, was minimal.
But when she met families dealing with Alzheimer’s, Gwyther started chipping away at the myriad of problems they faced – starting support groups, a newsletter and a 24-hour hotline while also helping to connect families across the state with needed resources.
In the process, she became a national expert on the topic and has been active in local, state and national efforts to provide care for Alzheimer’s patients and their families.
Over the past 37 years, she has organized conferences for professionals involved with Alzheimer’s patients, written more than 100 articles on the topic and co-authored two books, including a best-selling guide aimed at helping nursing home workers care for Alzheimer’s patients.
The program she founded and runs, the Duke Family Support Program, recently received an anonymous $1.1 million donation to sustain its programs, and has recently started a support group for people in the early stages of the disease.
She was the main person we leaned on through our 14-year journey. And you can multiply that by a thousand or more people across the state that she’s been helping quietly over the years to see the impact she’s had.
Nancy Marks, of Durham, whose husband suffered from Alzheimer’s disease
Nancy Marks of Durham met Gwyther when her own husband was diagnosed with Alzheimer’s in 1984, and says she was a lifeline. Over the years, she says, that influence has spread exponentially through Gwyther’s personal caring and capable advocacy for those affected by this cruel disease.
“She was the main person we leaned on through our 14-year journey,” Marks says. “And you can multiply that by a thousand or more people across the state that she’s been helping quietly over the years to see the impact she’s had.”
Starting with support
Gwyther’s position is an unusual one. While her program is based at Duke, it is funded entirely through grants and state contracts. Trained as a social worker, Gwyther regularly consults with academics and policy makers in roles usually reserved for doctors and full-time academics.
She was only the second person without a doctorate degree to serve as president of the Gerontological Society of America in its 60-plus year history.
Yet, as one of three people in her office – the third started last year – she’s also apt to pick up the phone if someone calls the 24-hour hotline.
She says the arrangement allows her to propose specific problems for researchers to consider based on her work with families, and then to use their research to help families.
Gwyther, originally from St. Louis, landed in the Triangle because of her husband’s job. He’s now a doctor at UNC-CH, but she immediately sought work at Duke.
She had taught classes in aging at Case Western University in Ohio, and says all of the best training materials came from Duke, home of one of the nation’s first research centers devoted to aging.
“Duke was Mecca for research in aging,” Gwyther says.
She was working at a clinic devoted to geriatric patients when a neurologist who was doing studies on Alzheimer’s started referring families to her.
When a family made a small donation to help in elder care at the hospital, Gwyther proposed using it to help Alzheimer’s patients. Her first step was a support group.
“These families really wanted to talk to one another,” she says.
She collaborated with national advocates who were at the time forming a national group devoted to the disease, and in this way she became one of 30 founding members of the Alzheimer’s Association of America.
At first, some families were driving several hours to monthly meetings in Durham. But soon, Gwyther was traversing the state, encouraging communities to create their own support groups and other programs for Alzheimer’s patients.
“I would come in and say, ‘Your community has a problem that starts with ‘a’ and doesn’t rhyme with anything,’ ” she says, “and we’d take it from there.”
Realizing the need for better information, she started a monthly newsletter. The hotline was her next step, allowing frustrated caregivers to get guidance and a break from their isolation.
In the 1980s, she was asked by the national organization to write a guide to help nursing home workers care for Alzheimer’s patients, and ended up using examples from her own grandmother, who was suffering from the disease.
The experience helped her understand the emotional side of dealing with the disease.
“The first time your mom can’t find her way to the beauty shop she’s gone to for 30 years, it really sets you back,” she says. “It’s pretty powerful.”
She’s worked on a number of studies, often in partnership with Duke researchers, on effective methods to improve care for Alzheimer’s patients and help for their caregivers.
In the 1990s, she served on a national advisory panel devoted to Alzheimer’s, and completed a health policy fellowship in Washington, D.C.
She serves on a state task force charged with developing an action plan to help families affected by Alzheimer’s. North Carolina is one of the last states to adopt such a plan, she says, which is crucial given the state’s graying demographic make-up.
In 2012, the group started an eight-week course aimed at helping people who were newly diagnosed with Alzheimer’s or other memory problems. It was so popular that Gwyther and her colleagues developed a slate of activities to allow the groups to meet on a regular basis, adding another wrinkle to the vast network of services offered by the center.
While Gwyther, 70, considers retirement, she says she is not planning to do so anytime soon. The gaps she’s sought to close persist and change.
Unlike when she was starting out, families are now faced with a glut of information, some of which is unreliable, which her program seeks to evaluate for its participants.
These days, most questions come by email, and Gwyther can reply with information prepared to answer a wide variety of common questions. But the personal connection is still important, given that Alzheimer’s affects everyone in a unique way.
“I always say that if you’ve met one family affected by Alzheimer’s, you’ve met one family,” she says.
Lisa Pepper Gwyther
Born: September 1945, St. Louis
Residence: Chapel Hill
Career: Director, Duke Family Support Program; associate professor, Department of Psychology and Behavioral Sciences, Duke University
Awards: First national recipient of the John Heinz Congressional Fellowship in Aging and Health
Education: Master of Social Work, Case Western Reserve University
Family: Husband Robert; children Marni and Ryan; four grandchildren
Notable: Among the many awards Gwyther has won over the years are two awards for documentaries on Alzheimer’s she produced.