They’ve heard the stark facts, that every 67 seconds someone in the United States develops Alzheimer’s disease, that the numbers of Americans with the illness may nearly triple by 2050, that there still is no cure.
But this is what many in the gathering Wednesday at Massachusetts General Hospital wanted to know: What are researchers doing to help the millions of people living with the brain-robbing illness right now? Is anyone paying attention to their intense feelings of isolation, and of being shunned?
Said one man in the audience who was diagnosed with Alzheimer’s disease: “What’s going on with the humanity?”
The event, which drew roughly 200 people to Mass. General, was part of HUBweek, the ideas festival founded by the Massachusetts Institute of Technology, Harvard University, Mass. General, and The Boston Globe.
Alzheimer’s research is primarily focused on finding ways to detect and treat the disease before it wreaks irreversible brain damage. Scientists around the world hope to find a simple blood test, or a screening that could identify a change in a person’s sense of smell, Dr. Bradley Hyman director of Mass. General’s Alzheimer’s Disease Research Center, said. A faltering sense of smell is thought to be one of the earliest signs of Alzheimer’s.
Specialists at the event agreed that as they search for “the magic pill” to halt the disease, more attention needs to be focused on the quality of life for the legions who struggle daily with the illness. About 5.3 million Americans are estimated to have the disease, according to the Alzheimer’s Association.
What about suicide, one audience member asked.
That was an intense and not infrequent topic of conversation among the group of younger adults with Alzheimer’s — in their 30s, 40s, and 50s — who author Lisa Genova followed as she researched the disease while writing her novel, “Still Alice.” The story chronicles a 50-year-old Harvard University professor with Alzheimer’s.
“This is not a normal thought in the general population,” Genova told the gathering. “But this is where the disease forces you to go.”
Yet there is very little in academic literature about this aspect of Alzheimer’s disease, said Dr. Steven Arnold, who just joined Mass. General’s Interdisciplinary Brain Center.
Dr. Teresa Gomez-Isla, a brain specialist who treats Alzheimer’s patients at the hospital, said she encourages patients who are feeling isolated to create a list of the people who make them feel comfortable and spend as much time with them as possible, because social interaction helps keep their brains active.
After the event, Mike Belleville, a 54-year-old Douglas resident diagnosed with Alzheimer’s two years ago, said he was encouraged to see so many people gathering to talk about the disease.
“It’s only going to make things better,” said Belleville, who had to resign his job two months ago as a telecommunications technician, after 18 years, because he could no longer perform well at work.
For Rudy Tanzi, a Mass. General brain specialist well known for his Alzheimer’s research, listening to patients at the gathering speak so candidly about feeling disenfranchised was “a powerful message for researchers to hear,” he said. It can only help scientists remember to be more understanding and “live in the moment” with patients who are often confused about time and context.Kay Lazar can be reached at Kay.Lazar@globe.com
Correction: An earlier version of this article had incorrect information about the novel, “Still Alice.”