Christina Muscatello paints with her grandmother, Mary Muscatello.
From an early age, Christina Muscatello felt a special connection with older adults.
“I grew up with my grandparents and my mom on this street where everybody was retired, so I was everybody’s grandkid,” she recalls. “I just hopped between everybody’s houses and talked with them.”
It wasn’t until later that she made caring for older adults with memory loss her life’s mission. Through her work with nursing homes and assisted living centers, private consultation with families, and a non-profit that she co-founded, The Memory Maker Project, Christina uses art to provide artistic expression, culture, and advocacy programs for people living with memory loss and those who care for them.
Her strong relationships with the older people on her street led to her first foray into the world of memory care while she was still in college. A family friend who knew that she was close with all the older adults in her community asked if Christina wanted to be an aide for her mother who had Alzheimer’s.
“I started working one-on-one with this wonderful woman,” Christina recalls. “I had been around a lot of older adults, but never with anybody with Alzheimer’s. I learned a lot on my feet, but I really, really loved it. We had a really sweet rapport—there were frustrating moments, but we did a lot of art and poetry and danced around her kitchen a lot.”
Through close observation, Christina began to learn more effective ways of interacting and connecting with people with memory loss.
“When somebody has Alzheimer’s or another kind of dementia, there are things that aren’t safe for them to do anymore, but they’re so used to doing it that it can really cause a lot of anxiety and lack of dignity,” she reflects.
“I saw straight away that this woman was used to cooking for her 10 children and now she couldn’t use the stove anymore. So I said ‘I don’t know how to make pork chops—will you show me how to do it?’ and she was totally fine. If I had said ‘Oh, I want to cook for you, it’s not safe for you,’ she would have been really upset.”
Trial and error shaped her interactions.
“I realized that if I asked her pointed questions about her history, she would get a little upset. So I’d ask her, ‘If you could be anywhere in the world right now, where would you want to be?’ or ‘What do you think of this?’ so that she could just tell her stories without aggravating the part of the brain that is deteriorating, which I learned later.”
Integrating the arts and memory care
Her interest in arts education led Christina to Lesley to pursue her Master of Education (M.Ed.) in Art Education. But she wasn’t certain that she wanted to work with children.
“I knew that I didn’t really love teaching in the classroom setting and I was really trying to think through what might be the best path for me. I kept going back to this dream of, ‘I wish I could just teach art to people with Alzheimer’s all day—that would be so nice.’”
She began to research jobs that connected art and Alzheimer’s and found work in Boston as a program coordinator and research assistant for ARTZ: Artists for Alzheimer’s through the I’m Still Here Foundation—a leading organization for researchers and practitioners of non-pharmacological interventions for people living with memory loss. She learned more about the scientific basis for the effectiveness using art as a connector.
“The amygdala is the part of the brain that that does not deteriorate throughout the entire dementia process. It’s where your fight-or-flight responses are. It’s your emotional center and it’s where the arts are processed and your long-term memories are stored,” she explains.
The cognitive symptoms of memory loss are forgetting things, getting lost, problems with names and recognition. The emotional symptoms are anxiety, apathy, depression, and anger, but Christina sees them as an understandable response to the cognitive changes that people with memory loss experience.
“When you can’t find your keys, how do you feel? Anxious, depressed, upset. We think of these as symptoms of dementia, but actually the symptom is the cognitive change – and then the symptom of the cognitive change is the emotional change,” she says. “We don’t know how to fix the cognitive changes, but we can really work to lessen the emotional symptoms by looking at and making art, and listening to music.”
Christina helped write plays and books especially for people with dementia and researched the impact the therapies were having. Her boss developed a program called “Meet Me at the Museum” designed for people with memory loss which led to programs being created at major museums around the world. Christina began leading museum tours and the techniques she learned during her training—asking open-ended questions, using art as a connector—confirmed many of the ideas she’d explored on her own.
On her first tour at the Peabody Essex Museum, she paid close attention to a man named Dave in her group who had Alzheimer’s. His aide had told Christina that Dave was non-verbal, but she noticed him responding to the conversations around him. When she used the artwork to engage him, he spoke at length, responding thoughtfully to her questions with personal memories and details.
Using art to engage with people with memory loss has benefits for caregivers as well, Christina points out. The art sessions can act as an informal support group for care partners, creating a space where they can connect with other people. Making art also gives the care partner a chance to reconnect with their loved one as a person and not a patient.
“Maybe there’ll be a funny moment or a tender moment,” she says. “A lot of memories come up during these programs that the care partner doesn’t think that they’re capable of. It also helps to watch the person that you love be able to do something instead of focusing on all the things that they’re not able to do.”
The professional becomes personal
Christina’s grandfather’s diagnosis with dementia prompted her to move home to Binghamton, New York, and she was able to use her training to care for her grandparents and continue her work with people with memory loss. In 2014, she started The Memory Maker Project with Kim Evanoski, a dementia-certified social worker. Their goal was to enhance the lives of people with Alzheimer’s and dementia and to reduce the need for pharmaceutical treatment by encouraging meaningful engagement with the arts.
For many people making or engaged with art, Christina explains, their negative behaviors are reduced drastically. And looking at and creating art helps people with memory loss preserve a higher level of individuality and autonomy.
“When you have a diagnosis of dementia, there are so many choices that are taken away from you," she says. "Often in a care community, residents no longer get to choose when they go to the bathroom, when they eat and what they eat, or how they dress themselves. When you’re an adult, even if your cognition is starting to falter, you still have the wisdom and the desire for dignity–that doesn’t go away.”
There is currently no cure for Alzheimer’s and working with people who are approaching the end of life can be sad and difficult. Burnout isn’t uncommon. But Christina is crystal clear about the importance of her work.
“Older adults have contributed so much to our world and made us who we are. It’s up to us to ensure that life doesn’t end with a memory loss diagnosis; a new chapter begins. And this is not thankless work—whether I’m working with my grandparents or an older adult who I just met, I’m never the only one doing the caring; they give me care as well.”
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