When Cara Perkins began her sixth acoustic rendition of “Twist and Shout,” the small crowd who’d gathered in armchairs around her picked up their drumsticks, maracas and tambourines once more. 

After the song’s bright arpeggio signaled another ending, the music therapist looked to her listeners. “One more time?” she asked. “Of course,” said a small woman seated behind her.

Cara Perkins sings “Twist and Shout” at the James L. West Center for Dementia Care in Fort Worth on a Friday afternoon in April. (Alexis Allison | Fort Worth Report)

Music therapy, the Friday afternoon ritual at the James L. West Center for Dementia Care in Fort Worth, is a favorite for attendees of the center’s Senior Day Program for people with dementia. The strategic repetition helps stimulate dormant parts of the brain, and her questions encourage decision-making and grow empowerment, Perkins said. Instruments provide exercise and another outlet for self-expression. 

Ultimately, the practice offers a “sense of hope, sense of reconnection, and a sense of fulfillment” to people with dementia and their families, she said. 

The day program, which reopened in 2022 after closing during the pandemic, is a similar protective force against a disease that afflicts millions of people in the U.S. and for which there is no cure. It’s slated to expand in June, director Heather Macchietto said.

‘Our gift to the community’

The James L. West Center for Dementia Care sits in a boxy, red-bricked building near the corner of West Lancaster and Summit avenues. There, people with dementia and their caregivers can find education classes and residential care in addition to the day program.

The latter serves as a bridge between home and residential care, Macchietto said. People with dementia can attend, as long as they can convey their needs, behave appropriately and want to be there. They’re assessed beforehand to make sure the program can meet their needs. 

The program runs weekdays from 7:30 a.m. to 6 p.m., offering a respite for caregivers and recreation for attendees. 

“So many of the families will say, you know, my loved one just sits in front of the TV all day and doesn’t do anything. He falls asleep,” Macchietto said. “He comes here, and he’s alive.”

On Mondays, attendees take dance and movement. Tuesdays and Fridays are music therapy; Wednesdays, games or cooking. Thursdays, arts and crafts. In the remaining hours, attendees eat breakfast and lunch, read and walk and partake in a devotional, if they choose, and a variety of other activities like wellness courses and picnics. 

The cost is $100 per person per day, private pay. Medicaid and Medicare don’t cover it, Macchietto said. And although the program yields returns for the West center more broadly — sometimes, attendees become residents — the price doesn’t quite cover the cost of the care. “This is really our gift to the community,” she said. 

Attendees at the Senior Day Program decorate frames with paint and flowers on a Friday afternoon in April. (Alexis Allison | Fort Worth Report)

‘I could not make it without James West’

Ava Chesser had cared for her husband through a stroke and cancer for more than a decade before her mom was diagnosed with dementia. The difference between physical illness and cognitive decline was staggering.

“I thought I knew something about caregiving until I encountered dementia,” she said. Despite her husband’s maladies, “cognitively, he was 100%.” Her mom was different: As the disease developed, the woman who was once a business owner in Fort Worth lost her ability to communicate. 

“She can’t tell me when something’s wrong. She can’t tell me what hurts,” Chesser said. “And when she’s having a bad day emotionally, she doesn’t have the words to tell me.”

When her mom moved in in early 2022, Chesser didn’t know how to help her. First, she hired a caregiver to come to her house for $30 an hour. Activities were limited — dominoes, cards, maybe a walk outside. “My mom was just slowly slipping worse and worse,” she said. 

She found the West center through a Google search. “I thought, let’s just try it,” she said. “And it’s been wonderful. I could not make it without James West. My mom couldn’t do it.”

The initial transition was hard. Macchietto remembers Chesser’s mom in the early days. She would stand at the door with her purse, asking when she could go. Now, after nearly a year of daily attendance, she doesn’t want to leave. 

A microcosm of that journey repeats day after day. Chesser’s mom doesn’t remember the program when she wakes up, Chesser said. Chesser explains where they’re going — a “community center” — and thinks of Groundhog Day. “And we get through that,” she said. 

Help for caregivers, too

Right now, Macchietto and her team care for roughly 13 people each day. The program can hold 20 and is slated to grow.

In late 2021, the West center purchased a new building near Texas Health Harris Methodist Hospital Southwest Fort Worth and hopes to move by June, Macchietto said. The new space will allow for more — more attendees, more activities. 

In the meantime, she’s organized a virtual training for nurses and social workers about the program. People who attend can receive continuing education credits, she said, and brainstorm how to partner with the center. She holds similar classes for potential families who want to learn more about the program.

Want to learn more? 

If you’re a nurse or social worker and want continuing education credit, join the center for a virtual presentation at 2 p.m. Wednesday, May 10. Registration required. 

If you’re a family member or friend of someone with dementia, join the center for a virtual presentation on one of the following dates:

  • 7 p.m. Thursday, April 27
  • 4 p.m. Tuesday, May 23
  • 6 p.m. Thursday, May 25

To register, call (817)-877-1199 or email Macchietto at hmacchietto@jameslwest.org.

As for Chesser, she takes her mom to the program every morning. She’s thankful for the opportunity, and she also attends her own courses at the West center. Right now, she’s enrolled in a six-week class for caregivers about behavioral issues in dementia. 

Chesser tries to take care of herself, too — a lesson she learned more acutely through the West center. She’s inviting friends to the house again, after a hiatus spurred by uncertainty over how her mother would react. And, after her interview with the Fort Worth Report, she got her nails done. 

“For the longest time, I didn’t learn to ask for help,” she said. “Now, I’m asking for help.”

Alexis Allison is the health reporter at the Fort Worth Report. Contact her at alexis.allison@fortworthreport.org or via Twitter.

Her position is supported by a grant from Texas Health Resources. At the Fort Worth Report, news decisions are made independently of our board members and financial supporters. Read more about our editorial independence policy here.

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Alexis Allison covers health for the Fort Worth Report. When she can, she'll slip in an illustration or two. Allison is a former high school English teacher and hopes her journalism is likewise educational....