The Joy of Creative Engagement for Caregivers by Ilyana Kadushin at Stories Love Music

Musicians, caregivers, and those living with dementia find connection and care in the joy of music.
Via The Joy of Creative Engagement Caregivers are given the time and space to remember the origin of music in their own lives and express the emotions that come so naturally with it.
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What is The Joy of Creative Engagement for Caregivers all about? Where did the idea for such a program come from?

In the aftermath of Hurricane Sandy, I had a life-altering moment playing a concert for those staying at a hurricane shelter in Brooklyn. I witnessed the profound effect that music could have when utilized in an interactive way. In making room for engagement with the music and each other,  a deeper human-to-human connection was found. It was a magical combination!

From this, the Joy of Creative Engagement for Caregivers came about. It is a free, multipart program that utilizes arts engagement to help caregivers to care for themselves and their loved ones. Being able to connect these two ideas took some time, but ended up being a crucial aspect of my work with Stories Love Music

In this program, we start with the analogy of building a home together. The foundation of this house must be strong enough to allow the rest of the house to stand tall and not crumble under the weight. The first part of our program focuses on caregivers using creative arts engagement on themselves for their stress management and self care. Caregivers are given the time and space to remember the origin of music in their own lives and express the emotions that come so naturally with it. In the second part, we teach them how to use creative engagement with the person that they care for during their most challenging caregiving activities. 

What has inspired you to grapple with dementia and build this program? 

I worked for 5 years as a musician and group facilitator in memory units of senior facilities and Alzheimer’s units of rehabilitation centers. In performing, we explored creative engagement with both caregivers and seniors with memory impairment. The skills and knowledge I gained during this time ultimately integrated into the program that Stories Love Music provides today as The Joy of Creative Engagement for Caregivers program.

Stories Love Music meets with caregivers at MAC Center Eastern Shore, Maryland.
Stories Love Music meets with caregivers at MAC Center Eastern Shore, Maryland.

How has working on dementia-related programming changed you?

In the 5 years of fieldwork, engaging with those who have Alzheimer’s and dementia had a profound effect on me as a musician and as a human being. I was a keen observer of the way our music and our engagement of people when it landed on them, sparked them, reanimated their presence in ways that were surprising and extraordinary. I already had a deep connection with music and storytelling, but it went deeper after working with those who have memory impairment. I bore witness to the universal language of music and the deeply personal attachments we have to it; and I watched as the music transcended everything that a person may remember or forget. I have written and performed songs about it, created videos about it, and share this knowledge with as many caregivers as I can!

Via The Joy of Creative Engagement Caregivers are given the time and space to remember the origin of music in their own lives and express the emotions that come so naturally with it.
Via The Joy of Creative Engagement Caregivers are given the time and space to remember the origin of music in their own lives and express the emotions that come so naturally with it.

How has The Joy of Creative Engagement program been received? 

After a nurse in a hospital took part in The Joy of Creative Engagement program and explored the power of music in her own life, she was able to apply the principles to a person living with Alzheimer’s for whom she was caring. Beginning with a memory of her own deep emotional connection to music, the nurse not only invited her patient to bathe with music playing throughout the process, but she also connected with the person, which changed the activity from a battle to an enjoyable experience. 

Another wonderful example is a family caregiver who took our program and was caring for her husband. The caregiver started playing the music her husband loved and sitting with him, being with him in this precious time they had together. She brought out drums for him to play with, as he had been a drummer in his life. She could see that he was enjoying this way of being together with her. 

In general, caregivers feel good that this program creates the space for them to be cared for and to care.

This work is dedicated to: The program is dedicated to all those generous, big hearted caregivers and the ones they care for!

To access the program or learn more about it, find information on the organization’s website.

What is a Spotlight?

The Dementia Arts Spotlight promotes visual and performing artists who are grappling with dementia through original work or innovative arts programs. The Spotlight—in a Q&A format where artists describe the details and significance of their work or program—connects each artist to the Dementia Spring community. Find examples of prior Dementia Arts Spotlights here. Know of an artist whose work should be Spotlighted? Send them this link!

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