A Symposium Not to Forget

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BY KALYN SAULSBERRY

Alzheimer’s from multiple perspectives.

Photo taken by Kalyn.
Photo taken by Kalyn.

Every Sunday morning, Virginia Marshall, a junior in Dunster concentrating in English, hops into a PBHA van and makes the thirty-minute trip to Hebrew SeniorLife Rehabilitation Center in Roslindale. HSL provides retirement communities for seniors throughout Massachusetts, and Marshall spends an hour there each week visiting Molly, a resident who enjoys playing chess and has Alzheimer’s disease. Marshall does this each week as a volunteer with the Alzheimer’s Buddies at Harvard College. There are forty-six volunteers, also known as “Buddies,” in this group, each assigned one person living with Alzheimer’s disease to visit with for an hour each week. The mission of this group is to respond to the “profound isolation and social disengagement experienced by people in the intermediate-to-late stages of Alzheimer’s disease.”

On Saturday, September 28th, the Alzheimer’s Buddies presented an interdisciplinary symposium on Alzheimer’s disease at the First Parish Church of Cambridge. The event was sponsored by Hebrew SeniorLife and hosted by Meredith Vieira, who was the original moderator of The View on ABC. The symposium was attended by a variety of individuals including Harvard undergrads, members of the Cambridge community, and families of individuals who live with Alzheimer’s disease and are served by the efforts of the Alzheimer’s Buddies.

The symposium was designed to allow experts from different fields to speak about their experiences and challenges in addressing Alzheimer’s disease. It opened with words from Jeffrey Robbins, the program advisor for Alzheimer’s Buddies, and Ryan Christ, the founder of Alzheimer’s Buddies. Speakers ranged from geriatricians such as Ruth Kandel, who gave an overview of the disease itself from a medical perspective, to Brendon Boot, an associate neurologist at Brigham and Women’s Hospital who showed videos of what happens in the brain when an individual develops Alzheimer’s and explained both the barriers and opportunities to treating the disease, for which there is no cure at the present.

Bruce Price, the chief of neurology at McLean Hospital, discussed the legal matters associated with handling an individual’s affairs and finances after he or she has developed Alzheimer’s. Mary Moscato, the president of Hebrew SeniorLife Health Care Services and the Hebrew Rehabilitation Center, spoke about changes in healthcare and how these changes affect those with Alzheimer’s and their families.
Among the eight speakers and the host, Vieira, there was a diversity of backgrounds, but all shared the common experience of having their lives touched in some way by Alzheimer’s either by patients they treated or family members they cared or continue to care for. However, one speaker, Michael Ellenbogen, has had a more direct relationship with the disease. He developed early-onset Alzheimer’s when he was just thirty-nine. Ellenbogen, five years after his diagnosis, delivered an inspiring speech about his own experiences and resulting career challenges, but he also issued a plea urging the audience to work towards eliminating the stigma of Alzheimer’s.
Following Ellenbogen’s speech, James Creasey spoke about the organization he founded called JiminyWicket, which allows volunteer high school and college students to visit retirement communities and play croquet with individuals living with Alzheimer’s. In contrast to the negative associations of Alzheimer’s disease, Creasey encouraged the audience to understand the disease in a different way: “It’s not just a problem — it’s an opportunity for hugs, for kisses, for smiles.”

The final speaker, Jennifer Carter, the manager of advocacy and community relations at the Alzheimer’s Association, urged the audience to take Alzheimer’s as an opportunity for advocacy and gave important tips to individuals wishing to change the way public policy treats Alzheimer’s disease.

It is not surprising that each of the speakers has dealt with Alzheimer’s in some capacity, since approximately 5.5 million Americans live with this disease today, and it is the sixth leading cause of death in America. With statistics like those, it is likely that everyone has been affected or at least knows someone who has been affected by the disease. As someone who understands the disease from a firsthand perspective, because my grandparents live with Alzheimer’s, I was inspired to hear other people’s stories and the progress that is being made to make the lives of people with Alzheimer’s better.

During the intermission, I spoke with an Alzheimer’s Buddy named Tamanna Hossin, a senior in Eliot, who joined the group last spring. Like the rest of the Buddies at the symposium, Hossin donned a shirt that read “Ask Me About My Buddy!”, so I obliged. Hossin told me all about her ninety-two year-old Buddy named Venetia who, Hossin bragged, has an excellent sense of humor. Hossin explained that despite the challenges of building a relationship with someone who has Alzheimer’s, “as long as there’s a smile on her face at the end of the day, it was worth it.”

During this three-hour symposium, speakers and guests alike grappled with the most recent and pressing developments regarding Alzheimer’s disease. Alzheimer’s is a peculiar disease — it’s not like a cold or the flu that you can take some medicine for and eventually get better. Unfortunately, Alzheimer’s itself doesn’t get better. However, last weekend, a group of individuals gathered together and formed a community dedicated to ensuring that each person living with Alzheimer’s could be guaranteed to have a few better moments each day.

Kalyn Saulsberry ([email protected]) was truly inspired by this unforgettable symposium on Alzheimer’s disease.