When you ask a young child or adult to describe dementia, you may hear common stereotypes—like people with dementia are old, severely impaired and have no quality of life. Others can often describe people with the condition as “demented,” “senile” and even “suffering.”
However, efforts from one organization based in Rochester, Minnesota, called Resounding Voices Chorus are changing those common and negative perspectives young people typically have toward those with the condition.
Jodi Melius, RN, study coordinator at the Mayo Clinic Alzheimer’s Disease Research Center and former board chair of Resounding Voices Chorus, told Seasons that through a collaborative effort between two groups – older adults with dementia in the Resounding Voices Chorus and students in the Stewartville High School choir – researchers at the Alzheimer’s Disease Research Center were able to decrease stigma and educate students through hands-on experience about the condition.
“This was an opportunity to understand how we can impact thoughts and attitudes around dementia and young people,” she said. “I wanted to come in … to do a survey which asked students in the choir to submit three words that you associate with the word dementia and submit that anonymously.”
That survey was conducted before any training or education took place. Melius said out of 30 high school students in the chorus, 29 of them completed the pre-event anonymous survey, and 23 of them completed the post-event anonymous survey.
Based on the responses from the pre-survey, there was one unique positive word, six unique neutral words, and 26 unique negative words associated with dementia. The most negative words included sadness, forgetful, elderly/old, scary, nursing home, painful and unaware. The one positive word associated with the condition was love.
Over the course of three months, the students engaged in dementia education training, hands-on activities, storytelling, personal sharing and collaborative rehearsals. They also received education dementia training on social media, including through the Resounding Voices Instagram page.
After the community concert performed on March 8, 2020, Melius said the students were asked to complete the same survey again. Researchers found a huge shift in the post-event survey, which revealed 26 unique positive, six unique neutral and 10 unique negative words each. The most used positive words were loving, kindness, hope, misperceived, normal, unique and choir. Overall, the students as well as the older adults in Resounding Voices were positively impacted by the intergenerational and collaborative musical experience.
The students as well as the older adults … were positively impacted by the intergenerational and collaborative musical experience.
“If grandma or grandpa has dementia, people we know generally … family and friends and community don’t know what to say, so they avoid. But if we can show that it’s incredibly important to continue to look at strength no matter what our disease is. But especially with dementia, we are still human beings that have human needs,” Melius said. “So, throughout our education with the students, we really challenged that thinking all around.”
Impact of collaboration with high school goes beyond Minnesota
Melius said the results from this collaboration could have huge impacts on other communities if it were to be replicated around the country. Doing this type of intergenerational and hands on-work will not only impact young people but older people who have the same needs.
The results from this collaboration could have huge impacts on other communities if it were to be replicated around the country.
“What will be the ripple effects of this tiny little project in Rochester, Minnesota, with a small town of high school chorus students?” Melius asked. “We won’t know. But we have to dig in and start somewhere. We have to start talking about ageism, dementia and the stigma around these issues, and find ways to make it meaningful so that it sticks with them and they can understand it.”
She added educating young adults about dementia and ageism now could dispel any fear around certain health conditions and build stronger health care systems and initiatives in the future.
“Young people understand that they can see things differently and maybe impact other people’s beliefs. They are our next generation of professionals; they are going to be nurses, doctors, social workers, community stakeholders and advocates,” she said. “If we can empower them to understand the importance of living well and living with purpose, especially with dementia, imagine the impact that could have on our community.”
About Resounding Voices
Resounding Voices began in early 2017 as a chorus for people with dementia and uses singing to make an impact on people with cognitive challenges. It’s also a space to help seniors with dementia build community and friendships with others who have the condition. Members of the group perform in regular concerts and are available to perform at other community events.
This project was presented in the poster session by Melius at the On Aging 2022 conference presented by the American Society on Aging in New Orleans, LA. This story is a part of Seasons’s continuing coverage of the event.