Play opens up Alzheimer’s caregivers minds and emotions
CONNECT Summit County’s Brain Storm Film Festival will present a free live performance of “Portrait of a Caregiver,” at noon on Tuesday, May 22, at the Park City Library’s Jim Santy Auditorium, 1255 Park Ave. For information, visit http://www.connectsummitcounty.org.
Alzheimer’s Disease is a form of dementia that causes not only a decline in memory, but also affects reasoning and thinking skills, according to the Alzheimer’s Association, a nonprofit that works to provide support to families and friends who are affected by the disease.
“In our lifetime, most of us will have some kind of relationship with a caregiver, by either being one and having to care for someone or be cared for,” said Jayne Luke, artistic director of Walk-Ons, Inc., a nonprofit theater company that performs for underserved audiences, which will present the drama “Portrait of a Caregiver” at noon on Tuesday, May 22, at the Park City Library’s Jim Santy Auditorium, 1255 Park Ave.
The event, sponsored by CONNECT Summit County, a nonprofit that raises awareness of mental health issues, is free and open to the public, and will be followed by a Q&A with Sheryl Bagshaw, dementia practitioner, educator and author of dementiaassist.com, a blog that provides a resource for those dealing with dementia.
“Portrait of a Caregiver” is the creation of Dr. Jacqueline Eaton, director of the University of Utah’s Gerontology Interdisciplinary Program.
“Dr. Eaton got involved with recording her interviews with Alzheimer’s patient caregivers several years ago,” Luke said. “She interviewed 22 people for months, and meticulously transcribed the interviews into an ethnodrama.”
An ethnodrama is a script that is unedited and culled from an interviewee’s experience with traumatic experiences and social issues, Luke said. Another example of an ethnodrama is “The Laramie Project.”
The format is designed to maintain the human element in the stories.
“It’s a newer form of live theatre that has been popular lately, where actors present the interviews verbatim,” she explained. “That includes all of the stammers, and use of ‘ands,’ ‘buts’ and ‘ums’ and captures the caregivers’ emotions.”
More than 31,000 Utahns age 65 and older were diagnosed with Alzheimer’s Disease in 2018, and while these patients slip deeper into their ailment, caregivers are continually on call to help with bathing, dressing and feeding, according to the organization’s Utah chapter.
Sometimes the caregiver, who is usually a family member, can feel so isolated and discouraged, Luke said.
“Caregivers spend most of their waking hours caring for an elderly family member, like a parent, as they did for us when we were infants,” Luke said. “This is the reverse of that, and is obviously something some people do with great love, although it’s extremely exhausting and exasperating — especially when they are dealing with a family member with dementia or Alzheimer’s.”
Eaton asked Walk-Ons, Inc., to mount the play in 2016, and worked with the company’s producing director Justin Ivie on staging it.
“We had never done an ethnodrama, and when we first got the script, we didn’t know if we could make it work as a dramatic presentation, because it’s not written like a literary play,” Luke said. “But because of that, it turned into something so magical about Dr. Eaton’s works and Justin’s staging.”
Walk-Ons, Inc., has performed “Portrait of a Caregiver” throughout the state, including in St. George and Logan.
“We usually do it at conventions and places that provide support systems for caregiving,” Luke said. “And we have found it has helped many of the caregivers who see (the play) deal with their stress levels better.”
Close to 60 percent of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high, according to the Alzheimer’s Association. And many as 40 percent of family caregivers of people with Alzheimer’s and other forms of dementia suffer from depression.
“What I think is so beautiful about what Dr. Eaton has written is when people see us and hear us, they will find that caregivers all feel the same frustrations and love when it comes to the people they are caring for,” Luke said. “We’ve had people come up to us and tell us they once believed they were the only ones who felt the way they did. The are so happy and relieved that they no longer feel alone.”
Luke feels that is important because many Alzheimer’s and dementia caregivers begin suffer their own health issues while caring for their loved ones.
“During the many conventions we have performed, we hear that being a caregiver is so stressful that many caregivers die before the ones they are caring for,” Luke said. “We have also found when caregivers feel frustrated with cleaning up after their patients … they feel guilty and start thinking of themselves as the world’s worst caregivers and are doing everything wrong.”
Luke said performing “Portrait of a Caregiver” has given her cast insight on the caregiver role.
“One of our actors is 84, and he has told us that the time is drawing near when someone will have to take care of him,” she said. “And another actor, who is actually caring for her mother who has Alzheimer’s, has told us that performing this show over the years has helped her in her own situation.”
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