Improv class allows caregivers to act out challenges of dementia

By LIZ SAUCHELLI

Valley News Staff Writer

Published: 05-13-2023 7:51 PM

NEW LONDON — Open scene: A woman with dementia is making dinner with her husband when their daughter arrives. The woman repeats a story about seeing someone at the grocery store. A beat later, she repeats it again.

From the other room, her husband lets out his frustration: He has lived this conversation numerous times today and begins correcting his wife.

Pause scene: Sage Tokash, the education director at the New London Barn Playhouse who played the daughter in the sketch, turns toward the audience seated on chairs in front of the Fleming Center’s small stage: What could the daughter and father have done differently?

The daughter “just being able to say, ‘It sounds like this day has been really tough,’ ” could help the father, Maureen O’Reilly, of New London, suggested from the audience. O’Reilly, whose husband is in the early stages of Alzheimer’s disease, was one of around 20 participants at the last session of Improv for Caregivers, a workshop co-hosted by the playhouse and Lake Sunapee Region VNA and Hospice. Another participant suggested the daughter take over caregiver duties from her father so he could get a break.

Then Tokash, Pegs Lucarelli, who was playing the mother, and Miguel Dooley, who played the father, ran the scene again using the participants’ suggestions.

“The repetition isn’t hurting anyone at all,” Tokash said in response to the suggestions.

According to the Centers for Disease Control and Prevention, 5.8 million Americans are living with memory disorders, including Alzheimer’s disease. More than 11 million people throughout the country provide unpaid care for those who suffer from memory disorders, according to the Alzheimer’s Association. Both of those figures are expected to increase as Baby Boomers enter later stages of life, and that’s particularly true in northern New England, which has the oldest population in the country.

“You can only read so much about the disease,” Marcia Goulart, who has served as a memory disorder caregiver for her sister and late mother, said in a phone interview. She volunteered at the workshops to share her experiences with others — particularly those who are first-time caregivers. “It’s a visual. It’s something that people can really relate to and hang on to.”

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It’s also a way to connect with other caregivers and share suggestions. Throughout the hour-and-a-half workshop Monday night, there was a lot of laughter and some tears.

“It’s serious stuff. We’ve got to unload,” Lucarelli, a volunteer, said in a phone interview. “We can give them space to unload.”

That was something Susan Mattson, of Grantham, appreciated about the workshops. She attended all four and appreciated having another place to connect with caregivers who understand what she is going through with her husband, who lives in a memory care unit.

“It’s hard for people who have not been involved to really get what’s going on,” Mattson said in a phone interview. “The approach that they had with the improv and everything, it really brought it to life.”

O’Reilly, who made a suggestion of how to help the spouse in the sketch, said she attended the event, in part, because she was curious. O’Reilly is a registered nurse who has done graduate work in therapeutic arts and wanted to see how improv could be applied to caring for people with memory disorders.

“It’s lovely to have those situations play out and have breathing room to come up with other options,” O’Reilly said in a phone interview. “That space is very precious, and they played it very well.”

The idea for the workshops came from a longtime patron at the Barn who also has been a caregiver, Tokash said. Tokash reached out to the Lake Sunapee VNA to develop the program.

“It was exciting for the Barn because it was really one of our first community-based programs where someone came to us with a need and we were able to fill that,” Tokash said.

She emphasized that the partnership with the VNA was crucial because they provided the medical expertise; at least one VNA staff member has been present at the each of the four workshops to answer any medical questions.

“What I didn’t want it to be was the Barn bringing in performers and then pretending we’re experts on caregiving when we’re not,” she said.

Like with any new program, there was some trepidation over how it would be received, Tokash said. Each workshop has had between 15 and 30 participants, from family members to friends to health care professionals — quite a few of whom have attended more than one session. Initially, the plan was to teach participants improv skills. Then the actors started to get requests from participants to embody the caregivers’ experiences and how to approach those situations.

“It’s sort of a combination of us improving and taking a forum theater approach, where the actors actions are determined by what the audience wants us to do,” Tokash said.

No one was required to actively participate: They could simply sit and observe.

Mattson, the Grantham woman whose husband lives in a memory care unit, found it helpful that the actors covered a variety of relationships, from spouses to medical professionals to child-and-parent interactions.

Participants can also request that the actors create specific scenes. Among the most common are how to talk to a loved one about when it is time to stop driving and wives trying to help their husbands get ready in the morning. The actors also perform sketches about how to talk to medical professionals at facilities and navigate questions from concerned family or friends.

“Being able to work through these scenarios in safe setting can help prepare people for encountering some of these struggles or these relationships in other parts of their lives,” Tokash said.

On Monday night, the actors took up a participant-suggested scenario where they pretended to be a wife, Lucarelli, coping with her husband, Dooley, who kept referring to her as his ex-wife.

“In a lot of scenarios, a caregiver might be able to go along with it, but this one might be a bit tougher,” Tokash said during the sketch, in which Lucarelli continually corrected Dooley.

One participant suggested that Lucarelli laugh and make a joke about the ex-wife coming back. Another participant said she should go with what he’s saying.

The next time they ran the sketch, Lucarelli pretended to be Dooley’s ex-wife. She went along with his reality — which is a tenant of both improv and caregiving.

“(You have) to go into their world, because it doesn’t do any good to try to correct the person or say, ‘No, that’s not the way it is,’ ” Mattson said. “It is the way it is for them, and so it has to do with really paying attention to what the person is saying and where they’re going.”

That was a point that the actors and Goulart, an experienced caregiver, emphasized repeatedly, while at the same time acknowledging how hard that can be for caregivers to do.

“We are nurturers by nature … and we want to fix things. A memory disorder cannot be fixed,” Goulart said, adding that patience is key for interacting with people with memory disorders and for caregivers who are worried they are not doing things right. “You have to be able to forgive yourself, because you may not get it that first time, the second time, the third time.”

Tokash is in the process of applying for grant funding to hold more improv workshops. She’s also heard from other organizations that are interested in hosting programs of their own.

“Even though there are some serious moments, we want to leave people feeling hopeful,” Tokash said. “We want to validate all of the feelings a caregiver is feeling, because it’s a really tough job. Our goal is to provide that hope.”

Liz Sauchelli can be reached at esauchelli@vnews.com or 603-727-3221.

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