Facing Alzheimer’s Disease with Hope
Posted in GUMC Stories
OCTOBER 4, 2015—Following the screening of a documentary depicting the lives of three couples facing Alzheimer’s disease, October 1 in the Research Building Auditorium, panelists discussed the disease’s impact on relationships, the latest research findings and the ethical issues related to caring for a partner with a chronic illness.
Co-sponsored by GUMC and the Kennedy Institute of Ethics, more than 40 people attended the screening of “The Sum Total of Our Memory: Facing Alzheimer’s Together,” which was previously screened as part of the NOVA International Film Festival in Fairfax County, Virginia. The screening was organized with support from Daily Dementia Caregivers. “I do feel like I’ve come full circle,” said Barbara Klutinis, filmmaker and former microbiologist at Georgetown, during the panel discussion. “It’s not that different being a microbiologist and a filmmaker. You’re looking at life through a lens.”
After her husband was diagnosed with Alzheimer’s disease in 2010, Klutinis noticed that he seemed to struggle to find his memory and she wondered if the disease itself was trying to tell her something. “The film really started out as a poem,” she said. “If this disease could talk, what would it say?”
Inspired to create the film after her husband’s diagnosis, Klutinis connected with other couples through a support group. Her husband’s doctor also agreed to be in the film. “Usually films find me. I don’t go looking for films,” she said. “I just wanted to give people hope that people can live with this disease.”
As director of the Memory Disorders Program and professor of neurology at GUMC, Scott Turner, MD, PhD, said that he feels hopeful about the current state of research on Alzheimer’s disease. While the number of Americans with Alzheimer’s is growing, advances in imaging and immunotherapy are encouraging, as are the prospects of developing early interventions for patients with mild cognitive impairment. “I’m very optimistic,” he said. “I’ve always been optimistic. You have to be with this disease.”
Turner described “The Sum Total of Our Memory” as possibly one of the best films he has seen on the topic of Alzheimer’s. Most of the time when Alzheimer’s is depicted in film and television, the topics of research and clinical trials are left unaddressed, he said. Only 1 percent of patients with Alzheimer’s disease participate in clinical trials, Turner said, because most of them aren’t aware that they have that option. Just having 2 percent of patients involved in clinical trials would make a significant difference in researchers’ ability to move potential treatments forward.
“We would really welcome a lot more research participants,” Turner said. “We have many clinical trials in progress.”
“I thought what we saw tonight was great art,” said Kevin Donovan, MD, director of the Pellegrino Center for Clinical Bioethics and senior clinical scholar at the Kennedy Institute of Ethics, after the film screening. “We didn’t walk a mile in anyone’s shoes but we walked a few yards.”
While patients who believe they may have Alzheimer’s disease are sometimes hesitant to get tested, Donovan said that getting a diagnosis can help facilitate end-of-life planning. “I think that advanced planning is important for everyone,” he said. “Most of the people here intellectually understand that there is an end to all of this.”