grew up a short distance from my grandmother’s house. My grandmother was the first person to give me a journal. She was my first piano teacher. She taught me the importance of saving money, and she encouraged me to go to college. One thing that my grandmother never taught me about was the fact that she was my grandfather's primary caregiver. As I grew up, I watched my own father retire in order to become the primary caregiver for this grandmother. And I became a caregiver, too.
My name is Jackie Eaton and I’m an Assistant Professor in the College of Nursing at the University of Utah. As an undergraduate I majored in theatre and I am here to tell you how these skills are vital in the work that I do to improve how we support caregivers of persons living with dementia.
As an undergraduate student, I worked in an assisted living facility as a nursing assistant. The job was physically draining, challenging, and I loved it. I loved the unique stories of each individual that lived there. One woman that I cared for had very challenging behaviors. She would hit, spit, swear, anything to stop us from providing her with the care that she needed. I would attempt to ask her questions, trying to find some way to reduce the challenges of these caregiving tasks. One day, I asked her, "What's your favorite song?" And she responded. She sang, "I'm coming home, I'm coming home. I'm coming home today. For I long to see the old folks again, I'm coming home to stay." And from that moment on, when I was providing her care, if I would sing this song, the aggression would pause long enough for her to join in and we would get that job done. I learned from this experience that my skills in the performing arts could help me as a caregiver, and it also taught me that I wanted to become a gerontologist.
Family caregiving in America
During my graduate work, I had wonderful mentors who encouraged me to incorporate the arts in my research. I began developing research-based plays called ethnodramas. These take qualitative data, such as in-depth interviews, and we analyze that data to identify themes. The themes become the outline of the script, and the direct quotes from participants become the words of the script. The purpose of ethnodrama is to communicate research findings in a way that connects with a wider array of individuals.
During this graduate work, my dad retired to take care of my grandmother, and I had the opportunity to return home to give him some respite. The caregiving was challenging, monotonous, and emotionally complex.
It was during this time that I started learning about the realities of family caregiving in America. In the United States, 53 million individuals provide the majority of services and supports for older adults. It is the backbone of our long-term services and support systems. Caregivers save us 470 billion annually. Caregivers are important.
Caregivers are also burnt out, stressed, overburdened, and they frequently come to the caregiving situation with very little information and knowledge about how best to support their aging family member.
By the time the average caregiver asks for help, they are already burnt out. With my research, I wanted to connect caregivers, like my grandmother and my father, to resources that could reduce burden and stress, but also communicate their needs to the wider community with the goal of improving practice and policy.
Portrait of a Caregiver
I developed "Portrait of a Caregiver". This ethnodrama was developed over four months with family caregivers interviewing one another about their experiences caring for an older adult family member. We have produced performances throughout Utah in partnership with Walk-Ons Inc., a non-profit theater company that takes theater to underserved audiences. One of the themes in this play that has resonated with audiences is as follows:
"They don't see behind the scenes, they don't see the doctor's appointments, they don't see the messes that are made that you have to clean up. They don't. They don't see those little things."
I learned from this research project that caregivers want others to see. They want others to benefit from their stories and they want their family members to better understand the realities of the caregiving experience. After viewing, audiences have expressed greater understanding about caregiving and they felt like their own experiences were validated. The majority of those individuals who participated in developing "Portrait of a Caregiver" were caring for a family member living with dementia.
Research into caregiving
Caregivers who are providing support for persons living with dementia have greater levels of burden, stress, and burnout. It is one of the more complex caregiving scenarios, and I wondered, "How could we use "Portrait of a Caregiver" to better support and prepare individuals for the complexities of dementia caregiving?"
With funding support from the National Institute on Aging (K01AG065623), I'm working with these caregivers to use the arts to improve engagement and interaction with caregiver training and support groups. We know that interventions that have caregivers actively engage in applying knowledge and skills produce better outcomes. However, we do not know why this is the case, nor how best to enhance active engagement for these individuals. We also know that the arts use multiple senses to engage audiences and there are specific techniques to improve how people practice and rehearse for live performance. I'm taking these concepts together to develop a process called Enhancing Active Caregiver Training or EnACT.
During this process, caregivers view a short vignette from "Portrait of a Caregiver", then in small groups, they practice for caregiving, similar to rehearsing for a live performance. They use arts-based techniques that allow them to more fully engage in applying knowledge and skills. Then, they reflect on the experience. I'm evaluating how this process works and assessing the mechanisms of action. The goal to reduce caregiver burden and perceived stress while improving caregiver well-being. It is my hope that engagement through storytelling and the arts can help us better understand and see behind the scenes in order to more fully recognize the many little things that make up a life, improving our ability to support the unpaid caregivers in our communities.