Joan K. Monin, associate professor of public health (social & behavioral sciences), has made gerontology her life’s calling. As director of the Yale School of Public Health’s Social Gerontology & Health Lab, she works to create effective interventions for family caregivers working with older people living with Alzheimer’s disease and other forms of dementia. But her teaching extends beyond the classroom.
For the past five years, Monin has partnered with LiveWell, a nonprofit organization pioneering services and supports with and for people living with dementia, in Southington, Connecticut. Working with LiveWell’s Empowering Partnerships Network (EPN), YSPH students and postdocs interact with people living with dementia firsthand. This hands-on experience empowers partnership, and ensure persons living with dementia have a central voice in improving care and influencing research.
“This work feels so good to me,” said Monin, who recently was elected to the Academy of Behavioral Medicine Research, the premier scientific organization for scientists working at the intersection of behavior and medicine. “I feel like I am finally giving back to society in a way that I can see very clearly."
Joan's passion, authenticity, and leadership to conduct research collaboratively has proven that partnership between researchers and the lived experience matters... She continues to pioneer the importance of this approach with her students.
Heidi Gil, Chief Strategy Officer, LiveWell
While researchers are skilled in conducting analyses and writing papers, Monin said, they need to make their scientific findings and innovative ideas more accessible to the public, especially those with lived experience who would benefit most from them.
“We need to understand how to get this information and resources to the people, not just publish them in journals that are read mainly by scientists,” she said.
Monin’s initial research on dementia was based in wanting to learn how families support each other and stay emotionally close. “Dementia is one of those situations that really test the limits of emotional connection and relationship quality for spouses, parents and children, extended family, and friends,” she said. “And each time I talk to someone about my research, it is a reminder about how much support is not available in our society, despite that this situation is so common.”
Monin learned about LiveWell (then called the Alzheimer’s Resource Center) when she attended a book club with a friend who had just moved to Southington. One of the other attendees learned about Monin’s area of expertise and said she was an art therapist there, “and that I should visit – that I would love what they have going on there.”
Monin contacted LiveWell’s chief strategy officer, Heidi Gil. In 2018, she attended the first performance of “To Whom I May Concern,” a theater-styled event that was a revelation: first-person stories told by people with early-stage dementia, which she called “mind-blowing.”
“The feeling in the room was breathtaking,” Monin said. “People were there from all over the community witnessing people living with dementia sharing their stories with humor, vulnerability, and strength.”
Shortly after, Monin was invited to be on the planning committee of a PCORI grant LiveWell had received to build the capacity of people with the lived experience and researchers to partner in all phases of the research process. The result was the creation of the EPN. Monin, along with her postdoc at the time, Talha Ali, and her research nurse, Kathy Williams, took part in its first partnerships training session.
The EPN is now advancing a mission to create a diverse peer network of partners leading a movement to promote brain health and transform the experience and view of living with dementia. The vison of the EPN is to make impact that matters through research, policy, and practice.
Monin and her lab have been instrumental in advancing the EPN. One of the EPN members living with dementia did a remote art class with her lab students during the pandemic. Monin recently wrote a grant with the EPN to create a support intervention for adult children and their parents to retain their relationship quality when a parent has dementia, and had a brainstorming session with EPN to plan the intervention.
In partnership with LiveWell, this process of engaging people living with dementia in planning the invention was recently shared with over 80 researchers during the Annual Impact Collaboratory workshop.
“Joan’s passion, authenticity, and leadership to conduct research collaboratively has proven that partnership between researchers and the lived experience matters and can significantly impact what priorities are addressed and how research is done,” Gil said. “She continues to pioneer the importance of this approach with her students.”
Monin’s current postdoc, Emily Mroz, is also working with the EPN, collaborating on developing research projects to respond to priority needs expressed by people with dementia. She is primarily working on a project with the EPN to define the concept of “purpose in life” for those living with dementia.
“Myself, Dr. Monin, and the LiveWell team have conducted research [manuscript under review] showing that adults in the U.S. experience a loss of purpose after being diagnosed with dementia,” said Mroz, who came to YSPH in 2021 after earning her PhD in psychology at the University of Florida. In the spring of 2023, she took Associate Professor Ijeoma Opara’s Community Based Participatory Research class, and around that time, Monin introduced her to Gil at LiveWell.
“We want to act on this finding by developing opportunities to bolster purpose after a dementia diagnosis,” Mroz added. “But instead of going the traditional route, just thinking of strategies ourselves, we want to act on the ideas, suggestions, and lived experiences of LiveWell residents and EPN members.”
The biggest reward of working with the residents, Mroz said, is “is understanding on a deeper level how to translate the scientific process to involve people with lived experiences across the course of a project. This involves efforts to make space for their presence, voices, and participation at major junctures in the process. And it also involves giving them opportunities to lead the dialogue – because they can, and they want to!”
Also in the spring of 2023, Sarah Valeika, MPH ’25 (social & behavioral sciences), did an independent study with people living with dementia to create a video meant to reduce the stigma about them. The end result was a video theatrical piece with stories, music, and images, including photos taken at each member’s home.
Her work with one resident, who was living with Lewy Body Dementia and Parkinson’s, “was centered on compiling, enhancing, and uplifting those stories of community members, with the ultimate goal of reducing stigma surrounding memory loss diagnoses,” she said, adding that destigmatizing dementia is a passion for her.
“It was an absolute gift getting to work with these community members!” Valeika said. “I really learned just how much we are all bound together by a desire for connection, and that community can be found in unexpected places.”
Gil said she and LiveWell are “deeply grateful” to Monin and all the Yale students who have worked with them.
“Our collaboration is changing how research is done and is redefining life with dementia,” she said. “There is exciting work ahead with fueling a ‘dementia-positive movement’ that ensures the worth and contributions of those living with cognitive change are upheld. We need the energy and wisdom of students to join us in building the momentum of this movement and and changing how dementia is viewed and experienced!”