Kathleen Schock doesn’t claim to be an art expert. But in her elegantly comfortable home filled with her sister-in-law’s artwork, she points out a favorite piece as it reflects the afternoon sun, changing at every angle.
She recalled that four years ago, Jim, her husband of 51 years, was diagnosed with dementia. But like the painting on her wall, revealing its subtleties at various angles, how they live with an incurable disease is a matter of perspective.
“There is still life to be lived. It’s very easy to be upset and bitter about your diagnosis, but every day there’s something beautiful, there is something enjoyable, there is something funny. You just need to take the time to notice it and put yourself out there,” she said.
To create a sense of normalcy among the days marked by a variety of doctor’s appointments, the Schocks meet online the third Saturday of each month with other members of the dementia community to discuss works of art curated by the San Antonio Museum of Art and share memories inspired by them.
“ReCollections – Art Conversations to Stimulate the Mind” began in May and is a collaboration between the Glenn Biggs Institute for Alzheimer’s and Neurodegenerative Diseases, and the Caring for the Caregiver Program, both part of UT Health San Antonio, the Alzheimer’s Association of San Antonio & South Texas and the San Antonio Museum of Art.
Melissa Flores, LPC, counselor and community program coordinator at the Biggs Institute, heard about a similar program at the Museum of Modern Art in New York City. The program has been replicated worldwide, with each program coordinator tweaking it to meet the needs of their community.
“About 2018, I met with our director at the Biggs Institute. We talked about getting more involved in the community and trying to engage with different community partners, especially around the arts. We wanted to see if we could create more dementia-friendly spaces for people living with a diagnosis,” she said.
Planning was deliberately slow to ensure input from all the program partners; however, the global pandemic further slowed progress and forced the program into the virtual world.
Sara Masoud, PhD(c), MPH, program manager for Caring for the Caregiver program, said that as the world learned to navigate virtual environments, lessons were learned on managing sessions successfully online. She said the pandemic gave her and Flores time to co-train SAMA’s docents with their project team on how to facilitate the program and communicate with those living with dementia.
Unlike other programs designed only for the person living with dementia or the caregiver, ReCollections is about being together. Masoud said it’s essential to ensure both the individual living with dementia and their caregivers can enjoy experiences that in some ways resemble their life before the diagnosis.
“Programs like ReCollections that allow and encourage the participation of both the person living with dementia and the caregiver are so critical in helping people find their way back to the relationship they had pre-diagnosis, pre-symptoms,” she said. “It allows for expression, particularly when you are centering it around art, which can clue into so many emotions that we may not be able to clue into in other settings.”
On a chilly November morning, families living with dementia, stare into their computer screens at “Still Life with Festive Breads” over a Zoom call while a SAMA moderator asks open-ended questions. Instead of analyzing the artist’s brush strokes or the historical value of the artwork, the participants reminisce about their favorite holiday dishes and the scents of the holiday seasons. The conversation diverts to sharing recipes from relatives long since passed to plans for the holidays. The moderator intentionally uses long pauses to give participants time to collect their thoughts. It is one of many techniques Flores and Masoud worked on with SAMA docents.
Tripp Cardiff, SAMA docent program manager, said the training helped the moderators understand how to relate to the caregivers and their loved ones.
“One of the most important tips for us was speaking about reminiscing rather than memory,” he said. “The term memory or asking people to share memories can be a bit disturbing. Instead, using more causal, free-flowing association and giving us language to communicate effectively and thoughtfully was probably one of our most important takeaways.”
Flores said she chose to focus on art to inspire reminisces because art and music have proven to stimulate the mind. Ginny Funk, director of programs for the San Antonio chapter of the Alzheimer’s Association, said music lies in the part of the brain that is one of the last to be impacted by the disease.
“I know with music, it’s in there deep, and maybe it’s the same thing with art. It’s in that magical part of the brain that I think lasts no matter how far deep into the disease it is,” she said.
According to the Alzheimer’s Association, more than 400,000 Texans are living with Alzheimer’s, one of several types of dementia, and more than a million family members provide care for loved ones living with the disease.
Masoud said a dementia diagnosis changes a family’s dynamics, which can lead to isolation. She likens it to becoming a parent for the first time. She said new parents often feel disconnected from their social groups. Programs like ReCollections, she said, create and strengthen social and familial connections.
“We are allowing people to reconnect with themselves. The power of it is that it’s a creative, inclusive space that reconnects caregivers with their care recipients while also reconnecting with people in their community outside of their direct social network,” she said.
Masoud said the program could produce a domino effect where caregivers and care recipients build a network of connections. Schock said she and her husband, Jim, joined Grace Notes Community Singers, a choir of caregivers and persons living with dementia sponsored by Meals on Wheels. They learned about the choir from two couples they met through other programs.
Masoud said these programs are not a cure-all but tools to help caregivers and their loved ones navigate the disease.
“These programs are simple models. But big things happen through these really simple concepts, like getting people together in a space and understanding that you are one of many. Then momentum happens,” Masoud said. “Then you are attending a support group, and then from that support group you’re going to therapy, or you are connected to a neurologist you didn’t know about. ReCollections is just one of many front doors to those networks of support we can offer.”
ReCollections is free to the public and held monthly. Registration is required and can be found on the SAMA website.