On October 31, 2019, I submitted the final manuscript to Jessica Kingsley Publishers for my book titled Dementia-Friendly Communities: Why We Need Them and How We Can Create Them. None of us could have guessed that four months from that date, the world would be enduring the beginning of the COVID-19 pandemic.
All my ideas about the creative ways people could make their communities more inclusive and welcoming for people living with dementia, as well as their carers, were suddenly disrupted. Early in the book, I described how many people living with a dementia diagnosis were disrupting frightening assumptions about dementia through their advocacy and activism on behalf of those with similar diagnoses. However, I never could have predicted that the efforts of people around the world to create dementia-friendly programs and services would be so rapidly and dramatically disrupted by a highly contagious virus.
These efforts have been disrupted but not destroyed. In future blog posts, I’ll offer other examples, but for now, I’ll describe the On a Positive Note chorus. This is a program of Fox Valley Memory Project, a non-profit that seeks to create a dementia-friendly community in northeast Wisconsin.
The On a Positive Note chorus features 30 people living with dementia, care partners, and a few community members. We say we leave the diagnosis at the door of our practice room. We have a paid director and an accompanist, and I volunteer as the administrative assistant.
Before the pandemic, the chorus met weekly to practice songs for various engagements in our community. Our performances were often scheduled months in advance and we selected songs to match the season or the event where we were singing. All the performances we had scheduled for spring, 2020, had to be cancelled and of course we couldn’t meet in person to practice.
Throughout the spring of 2020, our director, her husband, and their college-age daughter who was sheltering with them, released one video a week on YouTube in which they performed the songs we were supposed to be practicing. These delightful videos featured creative costumes and lots of silliness. Some chorus members told us they watched them repeatedly.
By late June, we were ready to try gathering via Zoom. This created several challenges for chorus members. For example, lacking good Internet access, one couple drove to a local library where they could connect while sitting in their car. Also, the Zoom screens were confusing for some people with dementia because there was too much going on. Using the “speaker view” helped and over the course of several months, most people got used to this new way of gathering. Sadly, however, a few chorus members have been unable to join us.
We put the lyrics in large font on the screen shared by the director. The accompanist made recordings of all the songs. Except for the director, we were all muted as we sang. Between songs, she unmuted us and interacted with us. These personal connections enabled us to get used to this new way of communicating.
Because we know that Zooming is not possible or comfortable for some of our chorus members, we stay in touch by writing notes and postcards, and by making telephone calls. We have delivered “goody bags” to everyone with things like fancy pencils and word search books. Our director made chorus members her famous “cherry dump” dessert and had driveway visits with nearly everyone. In other words, we have tried to retain our personal connections to chorus members in a variety of ways.
Once we can meet again in person, and schedule performances, we will need to work hard to reinvigorate our chorus. This probably will not happen until mid to late 2021. We know some people’s dementia will have progressed to the point where they can no longer participate. Also, since our chorus formed in 2014, several members have died. We even sang at one person’s funeral and we know we may do that again. For now, however, we are doing the best we can in challenging times to continue our efforts to be dementia friendly and inclusive through the joy of singing together even as we sit by ourselves in our homes or cars.