Texting program supports caregivers of people with dementia for free

In the United States, most people with long-term dementia are cared for at home, usually by family members. These caregivers bear the physical burden of helping their loved ones with countless daily activities, such as dressing and eating, while dealing with complex medical and insurance issues and remembering their loved ones’ illnesses. Caregivers often face it all in isolation with little or no outside support.

“During the dementia process, it is not only the person with dementia who suffers, but the whole family as well.” University of Kansas Alzheimer’s Disease Research Center (KU ADRC). “Approximately 40% of caregivers of people with dementia suffer from either depression or an anxiety disorder, in addition to other physical, mental and financial consequences of dementia.”

Thanks to Perales-Puchalt and his colleagues at KU ADRC and the JUNTOS Center for Advancing Latino Health at KU Medical Center, select caregivers in the Kansas City, Missouri area have the opportunity to receive free support through a new texting program I got Known as CareTEXT. CareTEXT provides users with tips and information on dementia, behavioral symptoms, end-of-life issues, self-care, social support, and other topics through automated text messages delivered daily for six months to help them improve their cognitive Helps care for sick people. just like ourselves. You can also join a live chat with a coach who can help you resolve your issue directly.

CareTEXT is available free of charge to caregivers of people with dementia in Cass, Clay, Jackson, Pratt, and Ray counties of Missouri with a grant from the Central American Regional Council (MARC). A Spanish version of his CuidaTEXT is also available.

In designing the program, the researchers uniquely addressed areas of great need. “To my knowledge, this is the only text messaging program in the world for caregivers of people with dementia,” said Perales-Puchalt, co-principal investigator of the project, director of the JUNTOS Center for JUNTOS. with her MSW girlfriend Mariana Ramirez. Promotes the health of Latinos.

Accessibility is key

In addition to receiving automated daily messages, caregivers can also text keywords and automatically receive text message responses. (Users receive a booklet about the program containing a list of these keywords.) For example, if someone texts the word “stress,” Mindful can receive a text message linking to a video about his meditation. There is a nature. Users can also text her questions to her research associate Christina Her Baker, MPH, who is her bilingual coach on the program.

“We also get messages from people who just need help and aren’t necessarily asking for anything,” says Baker. “We can validate it to say, ‘We are listening to you. We are here for you. We are here to support you.’ .”

The first to actually be developed was the Spanish version of CuidaTEXT. Perales-Puchalt received a grant from the National Institutes of Health to create a program specifically for Latino caregivers. Latino caregivers suffer higher levels of depression and are less likely to attend caregiver support groups and services because of transportation, language, and financial difficulties. and other barriers.

Perales-Puchalt and his colleagues chose text messaging programs over apps because of their relative accessibility. Texting is more cost-effective, easier to use, doesn’t require Wi-Fi, and can be used anytime, anywhere. They chose an automated text messaging software program that created and delivered message content based on input from a working group of caregivers and dementia care professionals.

information pill

A pilot of CuidaTEXT in 24 Latino caregivers, surveyed before and after using the program, found that caregivers’ levels of distress and depression decreased and their knowledge of dementia improved. I was. On the other hand, defiant behaviors exhibited by those receiving care, such as wandering and agitation, also decreased. Caregivers reported being very satisfied with the program, and no one stopped using it at any time.

“They really liked what they called ‘information pills,'” says Perales-Puchalt. “Instead of being sent a big piece of paper or something, they get a daily message, a ‘dose.’ Another thing they mentioned was that they felt supported even though they didn’t (reply) their messages. And[they]appreciated the reminder to take care of themselves too. ”

To create CareTEXT, Perales-Puchalt and Ramirez secured funding from MARC. Their team led a working group that included various caregiver populations, including African Americans and rural residents, to adapt some of his original CuidaTEXT messages.

More than 60 nurses have registered so far. “Caregiving can be a lonely quest. Users feel supported and accompanied, knowing they are away from someone who is there to offer a helping hand.” We are reporting it,” Ramirez said.

Perales-Puchalt said he looks forward to securing funding to deliver the program in Kansas and Missouri. He also thinks broader than that. “I think this should be available to everyone,” he said. “It’s easy because it’s mostly automatic.