The Triple Helix at JHU and JHU Politik co-hosted a panel of four speakers on Tuesday evening in the Gilman Hall atrium as part of an event titled “Alzheimer’s: Conversations on an Enigmatic and Devastating Disease.” The panel shed light on the disease through legislative, biological and personal lenses and was well-attended.
Janet Blount, an Alzheimer’s Association community outreach volunteer and a member of the panel, opened the event by sharing her own experience as a caretaker for her mother, who has Alzheimer’s.
“When I say that my mother has the cognitive ability of a second grader, let me tell you what that means. . .it means that when my mother leaves her room she cannot remember how to get to the dining room, which is juststeps away. It means that when she completes her meal she cannot remember how to get back to her room. It means that when she attempts to dress herself, at one time she might have on a dress, three hats, two blouses and shoes that don’t match,” Blount said.
Blount shared other details of her mother’s memory loss and talked about how her mother no longer feels the same attachment to the things that she did before developing Alzheimer’s.
“My mother, who was a strong supporter of Barack Obama and who cried with joy when he was elected now no longer knows the name of our president,” Blount said.
In addition to exposing the audience to the emotional repercussions of Alzheimer’s, the panel covered many of the legislative issues related to the disease. Panel member Jeff Last, the associate director of federal affairs at the Alzheimer’s Association, stressed the need for more awareness in order to push forward legislation regarding Alzheimer’s disease across the country.
“One of the things that we at the Alzheimer’s Association try to do quite a bit is to get Alzheimer’s out of the shadows. For too long Alzheimer’s was being treated as part of normal aging, which it is not. We want Alzheimer’s to be on the minds of everyone,” Last said.
Last said that Alzheimer’s disease has significant repercussions for the economy.
“Today Alzheimer’s is the most expensive disease in the United States, more costly than cancer or heart disease. . .Many of the people who have Alzheimer’s are on Medicare or Medicaid, and those are costs that pass down to many of us,” he said.
Last also pointed out that President Barack Obama included the topic of Alzheimer’s in the State of the Union address earlier this year.
“In the last State of the Union the President made a specific mention of Alzheimer’s disease. . .This shows both that this is something that concerns the president and the administration, and, because of the amount of polling that goes into speeches like the State of the Union, that it is something that is close to the hearts of the American people,” Last said.
Jerome Davidovich, co-founder of the Young Professionals for Alzheimer’s Awareness group, agreed that more people — and, in particular, more people in the younger generation — need to learn about Alzheimer’s disease.
“I commend you all for showing up and helping to change the perception that Alzheimer’s is an old person’s disease,” Davidovich said. “It affects everybody regardless of age.”
Dr. Suzana Petanceska, program director of the Division of Neuroscience at the National Institute of Aging (NIA), discussed the biology of Alzheimer’s disease. The NIA is one of the 27 institutes and centers of the National Institutes of Health.
Petanceska noted that Alzheimer’s research dollars are few and far between, especially when compared to the amount of money invested in fields such as cancer and HIV/AIDs research.
She also highlighted the fact that there are no survivors of Alzheimer’s disease in the way that there are survivors of cancer; this is problematic in that Alzheimer’s patients are not able to share their stories as a tool to rally support and visibility around the disease.
Freshman Taylor Veralli, who attended the panel, left with a new understanding of Alzheimer’s disease.
“I liked that they showed all four perspectives of Alzheimer’s,” Veralli said. “Janet Blount’s perspective in particular was very moving and inspirational.”
Leslie Sibener and Ellie Lucas, co-presidents of the Triple Helix at Hopkins, both agreed that the event was successful.
“I think that the event went extraordinarily well,” Sibener wrote in an email to The News-Letter. “I believe we exceeded our goal in incorporating diverse people’s opinions, and it was exciting to be able to see a conversation start between such an assorted group of people. I hope that in the future we’ll be able to have more events that bring people together with a common goal, but different ways of thinking, just as our event did this week.”
