New app gives hope to caregivers of loved ones with Alzheimer’s disease

By Shelley A. Sackett

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Alix Segil and Debby Segil

 

Debby Segil was home in bed with the flu. Rather than using the time to pamper herself with comfort food and old movies, the 89-year-old pint-sized dynamo seized the opportunity to do what she loves best: helping others.

As a licensed independent clinical social worker with 40 years of experience, Segil is used to thinking about ways to support those in need. On this particular wintry day two years ago, her thoughts turned to home caregivers of loved ones with Alzheimer’s disease or dementia.

“No one has taught them dementia’s ABCs, so they make lots of mistakes,” she said. “They still think they can explain things. They think they can reason with someone.”
A member of Temple Emanu-El since 1965, Segil feels she is carrying on her mother’s legacy of caring. “She always cared about welcoming newcomers in the Jewish community in Hazelton, Pennsylvania, where I grew up,” she said.

Segil knows what a difficult and lonely job it is to care for someone with dementia, especially at first. As program manager of the Family Caregiver Support Program at Greater Lynn Senior Services (GLSS) since its inception 15 years ago, she has had caregivers tell her over and over again, “This is such a difficult job. I don’t know if I can do it.”

So she decided to write a poem that could give these family caregivers something to prepare them from the beginning by helping them relearn how to interact with their loved one so they could both get along.

Knowing that a pneumonic device helps people of all ages learn and retain new information, Segil distilled her advice to a mantra of five words – distract, divert, and then agree – which became the refrain in her five-stanza poem.

Once she finished the poem, Segil thought, “Wouldn’t it be better if we could set it to music?” So she contacted her friend, Rick Goldin, who writes and sings children’s songs. “I thought he would be perfect because he would write a nice, easy tune,” she said.

Goldin made a recording of their “Caregiver Ballad” and Segil brought it to some people at GLSS. They loved the song and suggested developing an app that would provide a toolset for dementia caregivers with the ballad as its anchor.

A development team was created to shepherd the project from concept to Caregivers Matter, a free app. Team members Katherine Prouty, product manager, and Larry Ehrhardt, application developer, are both Marblehead residents.

So is Alix Segil, Debby’s 18-year-old granddaughter who helped with the website caregiversmatter.org as her Marblehead High School senior project. Although the two live in the same household, their lives rarely intersected in the “real world” until Debby suggested that assisting in creating the app was a perfect way for Alix to combine her technology savvy and love of helping people with the requirements of her senior project.

Working with her grandmother was a real eye-opener for Alix, who will soon be a freshman at Ursinus College in Pennsylvania. “I know she’s a hard worker because she’s always working at home,” she said of her grandmother. “Seeing her in the office, running around all day going to meetings, I realized she has a really long day. Like, every day.”

Like her grandmother, Alix credits her Jewish upcoming with instilling in her a sense of tikkun olam. “Being Jewish, I’ve learned you’ll always have a community to go to. The app helps make sure caregivers don’t feel alone in what can be a lonely job,” she said.

Released in June, the free app currently works on Apple and Android systems, with Kindle on the wish list. Its menu revolves around the ballad and a toolset Segil developed for GLSS with the help of a grant from the Massachusetts Office of Elder Affairs.

Pep talks, activities, and tips for getting through the day are on the app’s tabs, as well as a link where caregivers can learn more about dementia and also share their ideas and feedback.

“People need to know that they are not alone, that there are ways to make the caring easier,” Segil said. The app helps them remember the importance of also caring for themselves by relaxing, refocusing, and regrouping.

The app has received positive feedback, including from a friend of Segil’s whose husband passed away from dementia 10 years ago. “She told me that at that time, she had no confidence that anything could be better or that she could do anything differently,” Segil said. “She said this app would have been so meaningful to her because it gives hope.”

For more information, visit caregiversmatter.org.

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