Reducing the Stigma of Dementia Through Song

Having older adults with AlzheimerΓÇÖs and college students sing together can change younger choir membersΓÇÖ perceptions of dementia and reduce social isolation, both in those with the disease and their family caregivers. These are the findings of a pilot study conducted last spring at the John Carroll University in Ohio. (The study will be published in April 2014 in the American Journal of AlzheimerΓÇÖs Disease and Other Dementias.)

The dementia study is part of a worldwide effort to try to normalize the condition for people with Alzheimer’s as well as their families. Advocates want the public to know that dementia isn’t just about losses and what people can’t do.  And they want society to be inclusive so that families affected have a good quality of life—and don’t feel shunned.

The choir had 26 members divided among students, people ages 61 to 85 with early stage AlzheimerΓÇÖs or mild cognitive impairment, and family members such as spouses, a son or a granddaughter. The intergenerational group socialized before the seven rehearsals and final performance. (Some extended the time and went to dinner with their ΓÇ£buddies.ΓÇ¥)

Students were twice asked to write down ten words to describe AlzheimerΓÇÖs and dementia, both before they met initially with their buddies and after the concert. Halfway through the initiative and at the end, they were asked if their ideas or images of people with dementia and their family caregivers had changed.

Students’ initial words describing dementia included “sadness, sick, nursing home, helplessness, and deterioration.” Alzheimer’s researchers deemed that just 15 percent used positive words. When the students were retested at the end, 65 percent were positive for a change of 50 points. Just 18 percent were negative, down from 42 percent the first time.

Overall, students felt more comfortable around those with early stage AlzheimerΓÇÖs, found strengths in their buddies, and increased their understanding of people with AlzheimerΓÇÖs. The experience also helped their older choir members. It reduced their sense of social isolation, gave them a chance to express the stigma they felt, and was enjoyable. Both sides agreed that the experiment gave them a sense of community.

Before student Danielle Goddard, 20, joined the choir, she was little nervous. ΓÇ£All I knew about aging and AlzheimerΓÇÖs were things IΓÇÖd seen from movies and thought of just the final stages of AlzheimerΓÇÖs and that they couldnΓÇÖt do anything for themselves,ΓÇ¥ she says. ΓÇ£My experience broke the stereotypes. I began to see them as people rather than defined by their disease. I also hadnΓÇÖt realized there are different stages of AlzheimerΓÇÖs.ΓÇ¥

GoddardΓÇÖs buddy repeated herself a lot, but ΓÇ£her sense of humor came out,ΓÇ¥ Goddard says. ΓÇ£They and their families told stories and jokes. It was a lot of fun.ΓÇ¥

Afterward, many members exchanged emails. Phyllis Braudy Harris, director of aging studies at John Carroll University, conducted the study. She plans to offer it again to students and other families this semester. Harris sings the praises of this type of program: ΓÇ£Music cuts across all generations and brings people together.ΓÇ¥

Research for this post was conducted through the MetLife Foundation Journalists in Aging Fellows Program with the Gerontological Society of America and New America Media.

Sally Abrahms has published in TIME, Newsweek, The New York Times, AARP Bulletin and AARP the Magazine as well as on aarp.org. Follow her on twitter at http://twitter.com/sallyabrahms,┬áandplease visit her web site at┬áThis article originally appeared on Sally’s weekly blog on caregivers for AARP at http://blog.aarp.org/author/aarpsally/