Posted by Kathy Burnes and Beth Soltzberg
"While dementia changes memories and perception, creativity and music endure." Those were the words of Judith-Kate Friedman, founding director of Songwriting Works™, one of four guest artists at Sunday's Joining Our Voices conference. A crowd of 100 gathered at JF&CS Headquarters in Waltham to hear from a panel of those living with early-stage Alzheimer's. Participants then worked with Judith-Kate and singer-songwriter Bernice Lewis on collaborative songwriting and with guest visual artists Elena Clamen and Esther Friedman to make a paper quilt.
Stephen & Lisa Lebovitz and Beth Backer spoke about their family members to whom the conference was dedicated. The conference was made possible by generous support from their family charitable fund.
The panel, moderated by Nicole McGurin from the Alzheimer's Association of MA/NH, spoke from the heart about receiving the diagnosis of Alzheimer's, deciding who to tell and how, coping with memory and perceptual changes, and finding new, meaningful activities. A powerful moment for everyone was hearing one family describe how much more energy they felt once they finally shared the diagnosis with friends. The audience then laughed along as one panelist, a PhD from MIT, joked about losing his car repeatedly. The panelist's open-hearted humor set a tone for the day and went far to reduce the stigma of this disease that he called "the new leprosy."
After lunch, the focus turned to creative self-expression. Participants were reminded of the conference motto: no experience needed. Judith-Kate reinforced the message when she announced that this was a "failure-free zone," and participants responded by working together to create a song about baseball, football, and life. The process was both fascinating and amazing, allowing everyone the opportunity to weigh in on lyrics and melody.
Participants were also invited to join guest visual artists in the creation of a paper quilt. Drawing from a wonderful and inspiring variety of art supplies, participants quickly found their unique approach to addressing the questions that were posted throughout the room in their quilt square. What inspires you? What comforts you? What wisdom can you share? What really matters? What keeps you in the moment?
Professionals at the conference attended two afternoon workshops, "Engaging People with Early-Stage Alzheimer's/Dementia" was led by Nicole (who also moderated the morning's panel). The second workshop, "Art Matters: The Sense and Science of the Arts and Dementia," centered on using the arts in clinical practice and was led by Nancy Mazonson, director of JF&CS Parkinson's Family Support and Jan Maier, a senior research analyst at RTI International.
At the end of the day everyone gathered from their afternoon activities to view the completed paper quilt and hear an enthusiastic performance of the completed song. This conference brought together arts, support, and education. It engaged people who might not have come to an event exclusively focused on creative expression in arts activities. The laughter that filled the room during the Songwriting Works process and the meditative calm that suffused the quilt-making room, testified to this being a very unusual type of conference. "This day was a respite," said one participant, whose mother has Alzheimer's disease. "It gave me ideas of things to try. But it was also so much fun!"
Kathy Burnes is Project Manager of the JF&CS Geriatric Institute, which focuses on developing and implementing projects that translate research into community-based services including Aging Well at Home. Prior to coming to JF&CS in 2007, she worked as a senior research associate at Boston College's Center for Corporate Citizenship, and at the National Center on Women and Aging at Brandeis University. Kathy also worked for AARP and Operation ABLE of Greater Boston. She has a BA from the University of Michigan and a MEd from Northeastern University.
Beth Soltzberg, LCSW, MBA, coordinates Living with Chronic Illness, a program of Jewish Family & Children's Service encompassing support, education, and the arts. Beth's work includes facilitating caregiver support and education groups, and designing new offerings for families affected by Alzheimer's disease and other dementias. Beth earned her MSW and MBA from the University of Chicago and a certificate in end-of-life care from the Smith College School of Social Work. She holds an advanced credential in hospice and palliative care social work (AHPC-SW).