In 2014, I recruited a remarkable group of people to form a chorus that practiced weekly and performed for public concerts several times a year. Such choruses exist all over the world. However, our chorus was different from most others because it consisted of people living with dementia and their care partners.
Shortly after its founding, the chorus was named by one of the care partners: On a Positive Note. Soon we all received light blue t-shirts with our chorus name and logo, t-shirts we proudly wore to all of our concerts. We even wore them when we sang for the fancy fundraiser gala sponsored by the local chapter of the Alzheimer’s Association. Amidst the sparkly gowns and tuxedos, our t-shirts stood out.
Many chorus members had met through participating in memory cafés launched in 2012 by Fox Valley Memory Project (FVMP). FVMP is a nonprofit I helped to establish in northeast Wisconsin with the aim of creating a dementia-friendly and inclusive community through a variety of programs and services.
Memory cafés, the chorus, monthly meet-ups at local restaurants, quarterly daylong bus trips to interesting Wisconsin destinations, educational seminars, support groups and many other FVMP offerings help individuals living with dementia to meet others dealing with similar situations and to normalize lives too often burdened by social stigma. These social activities bring joy and meaning to people who frequently note how some of their friends drift away when dementia symptoms appear. Many have told me the only things on their calendars before their involvement with FVMP were medical appointments. After discovering FVMP programs, they said they could once again look forward to social gatherings.
Before the COVID shutdown, chorus members were faithful in their attendance, tolerant of one another’s dementia quirks, eager for social connection, and enthusiastic about singing together. One man regularly brought his small comfort dog to quietly sit by his feet. The chorus was so important to him that when he died, his family asked us to perform at his funeral. We wore our t-shirts, sat together in the back of the church, and when our turn came, we sang a moving version of “Let There Be Peace On Earth.”
One of our members always brought her baby doll; it calmed and comforted her. Chorus members never failed to chat with her about the good care she gave her baby. One woman sometimes spoke loudly and inappropriately; this behavior embarrassed her husband, but we assured him that we appreciated being with both of them. I had not anticipated the depth and significance of these relationships until I observed that when members died or relocated to memory care, their spouses continued to sing with us because this group had come to mean so much to them.
We sang for preschool classes, statewide conferences, community concerts, and for a large continuum-of-care community. The latter performances were especially poignant because some of our members had relocated to the memory care section of that organization and others sensed that someday that would become their home, too.
Remaining connected with people living in care communities has been an important component of FVMP’s identity. We say that FVMP will meet people’s changing needs because we know the condition that draws us together is progressive by definition.
One need that does not change, however, is the need for human connection and the need to feel that one’s life still matters. For example, at the concerts we hosted, residents of five memory care communities attended and sang songs selected for them to practice. After our concerts, we always served coffee and treats and it was inspiring to see the pride of family members and friends gathered in a large senior center room witnessing their loved ones sing.
All of these joyful events took place before the COVID pandemic forced us to cancel chorus practices and the concerts scheduled for Spring, 2020. Like so many other organizations, we had to pivot to connect with one another online, mostly through Zoom. Now, instead of nine memory cafés every month, in eight different locations, we offer two virtual cafés every week. And instead of weekly chorus practices, we now have bi-weekly Zoomed practices. In both instances, participation has dropped because people lack the technology or WiFi connections. Recently, however, some grants have enabled us to purchase iPads to loan and we have started to see participation increase as a result of our efforts to train them in their use.
For example, just this week, we had seventeen people join us for our Zoomed practice. This included four couples, one mother-daughter team, and the rest singles. We are all muted except for our director who uses “share screen” to show large print, bolded lyrics for our songs. Our piano accompanist records the songs ahead of time and somehow, we make the technology work for us.
We not only sing, but we also talk to one another. This week, one woman excitedly showed us the sheet of Green Bay Packer tickets she received in lieu of being able to attend in person. Everyone was excited to see this and urged her to get it framed. You can see in this photo that we were encouraged to wear Packer gear, something many people in Wisconsin own in abundance. We watched several old videos of football songs, talked about our favorite aspects of football (beer and bratwurst being a popular response), and shared stories of Packer triumphs through the years. In other words, chorus practices are not just about singing; they are about our friendships with one another.
Upcoming plans for Spring, 2021, include a virtual concert in collaboration with a high school music class learning about the importance of music for people living with dementia. The On a Positive Notes will also participate in a FVMP virtual field trip to several beloved locations in Wisconsin. The morning before the Zoomed trip starts, we will deliver gift bags to everyone who signs up to participate. We will sing a few camp songs and pretend we’re sitting together around a campfire. All of these efforts are designed to let people know they are part of a caring community and that dementia does not have to defeat them.