The Importance of Art in the Life of a Woman Battling Dementia

By Desiree Negrin

photo essay_0854Marianne Waldman of Fair Haven, N.J. sits down for an art session at Zakiaz Whimsical Shoppe on Oct. 27, 2018. (VMM photo by Desiree Negrin)

Stewart Waldman of Fair Haven, N.J. met the love of his life, Marianne, on one of their first days of college. They lived in the same dorm, fell in love, and married in 1980. Together, they lived in multiple cities throughout the United States, as well as Italy and Amsterdam before settling down in New Jersey.

As a young girl, Marianne loved writing and art. She continued to create throughout high school and college before becoming a teacher. She enjoyed art as a hobby while teaching and raising a family.

In 2013, Marianne was diagnosed with a form of dementia known as Frontotemporal Degeneration (FTD). This disease is not well known and is very hard to diagnose. Unlike other forms of dementia, FTD begins with a personality and behavioral change and gradually progresses over time. It affects personality, behavior, and executive function.

In the beginning, Marianne was still able to teach, communicate, and function normally. But eventually, she could no longer carry out her daily activities independently. She no longer speaks and she need assistance in planning and executing her routine activities. Her memory, however, is still intact.

Photo Essay_0915.jpgMarianne hunches over her art and focuses on coloring outlines of animals traced from stencils. (VMM photo by Desiree Negrin)
photo essay_0872Marianne continues to draw and create different pieces to display at sessions in the store and at home. (VMM photo by Desiree Negrin)

A local business owner and Fair Haven resident Zakia Shawy owns a small store called Zakiaz Whimsical Shoppe that offers art classes. Stewart reached out to Zakia in the spring of 2018 to set up classes for Marianne to express her creativity and continue the hobby that she was passionate about in her youth.

The pair typically meets up one to three times a week for one to three hours. They begin every session with drawings using paper and pencils. Then, Zakia will follow Marianne’s cues as to the types of art she would like to do that day. Some days, Marianne will follow a theme that Zakia set for her, and other days she will do what she wants.

The mediums they typically use are paint, pencils, paper, crayons, and pastels. Zakia has to be cautious when Marianne is working because she will often try to eat the supplies or wander. Marianne can often stay focused on her art and remain in one spot, but sometimes she will feel the need to pace around the store due to her active nature.

Photo Essay_0904.jpgFair Haven resident Zakia Shawy, left, watches Marianne, right, attentively and guides their art session to try and keep Marianne focused on drawing. (VMM photo by Desiree Negrin)
Photo Essay_0889.jpgMarianne, left, communicates through facial expressions and gestures with Zakia, right, to determine what their next activity will be. (VMM photo by Desiree Negrin)

At the beginning of each session, Zakia sets up a blank poster board. Throughout their time together, Zakia hangs up the work that Marianne completes to showcase all of her art.

Marianne is always very proud of her accomplishments and gets excited when she sees her work on display. At the end of sessions, she is able take her art home.

Photo Essay_1030.jpgA board showcasing all of Marianne’s art from the session allows for paint to dry and for Marianne to display her work and proud accomplishments. (VMM photo by Desiree Negrin)
Photo Essay_1025.jpgMarianne contently holds up a signed painting of a pumpkin in spirit of Halloween for Zakia and her husband Stewart. (VMM photo by Desiree Negrin)

Marianne benefits from the art sessions with Zakia. Art allows her to express herself and practice fine motor skills and focus. She is always very animated before, during, and after her classes. Seeing her art delights her, and she always comes in and leaves with a smile on her face.

“These classes are just the right mix of creativity and challenge,” Stewart said. “She always leaves with a big smile after the class.”

Photo Essay_1024.jpgZakia, left, helps Marianne, right, gather her things at the end of their class to ensure that nothing gets left behind and Marianne is ready to go. (VMM photo by Desiree Negrin)

People with FTD are predisposed to injuries and illnesses. The average life expectancy of people with FTD is seven to thirteen years after the start of symptoms. There is no cure for FTD or treatments to stop or slow the progression of the disease. There is only symptom management.

The Association for Frontotemporal Degeneration (AFTD) recommends following a daily routine, engaging in activities and managing symptoms to increase the quality of life of people with FTD to the fullest extent. The AFTD also suggests finding a group of experts for patients and loved ones to decide the best plan for treatment.

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