Text messaging program offers free support for carers of people with dementia

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 one with countless daily activities, such as dressing and eating, while dealing with complex medical and insurance issues and experiencing the heartbreak of seeing their loved one’s illness. close to deprive them of their memory and their personality. Often caregivers deal with all of this in isolation, with little or no outside support.

“In the dementia process, it’s not just the person with dementia who suffers, it’s also the whole family,” said Jaime Perales-Puchalt, Ph.D., MPH, deputy director of inclusive science , raising awareness and recruiting University of Kansas Alzheimer’s Research Center (KU CCRA). “About 40% of caregivers of people with dementia suffer from depression or anxiety disorders in addition to the other physical, mental and financial impacts of dementia.”

Thanks to Perales-Puchalt and colleagues at KU ADRC and the JUNTOS Center for Advancing Latino Health at KU Medical Center, select caregivers in the Kansas City, Missouri area now have the opportunity to receive free assistance through a new text messaging. known as CareTEXT. Through automated text messages delivered daily for six months, CareTEXT provides users with advice and information on dementia, behavioral symptoms, end-of-life issues, self-care, social support and other topics for help care for the person with dementia. as well as themselves. They can also engage in live chats with a coach who can help them solve problems directly.

Funded by a grant from the Mid-America Regional Council (MARC), CareTEXT is available, at no cost, to caregivers of people with dementia who live in Cass, Clay, Jackson, Platte and Ray counties in Missouri. A Spanish version, CuidaTEXT, is also available.

In designing the program, the researchers uniquely responded to an area of ​​great need. “To my knowledge, this is the only text messaging program for caregivers of people with dementia in the world,” noted Perales-Puchalt, co-principal investigator of the project with Mariana Ramirez, MSW, director of the JUNTOS Center for Advancing the health of Latinos.

Accessibility is key

In addition to receiving daily automated messages, caregivers can also text a keyword and automatically receive a text reply. (Users receive a booklet about the program that contains a list of these keywords.) If someone sends the word “stress,” for example, they might receive a text message linking to a video about mindfulness meditation. Users can also text questions to the program’s bilingual coach, research associate Christina Baker, MPH.

“And sometimes we get messages that don’t necessarily ask for anything, from people who just need help,” Baker said. “We’re able to validate that, to say ‘we hear you, we’re here for you, we’re here to support you.'”

The Spanish version, CuidaTEXT, was actually developed first. Perales-Puchalt received a grant from the National Institutes of Health to create a program specifically for Latino caregivers, who suffer from higher levels of depression and are less likely to participate in caregiver support groups and services due to health issues. transportation, language, finance and other barriers.

Perales-Puchalt and his colleagues chose a texting program over an app because of its relative accessibility. Texting is more economical and easier to use, does not require Wi-Fi, and can be used anywhere and anytime. They developed the message content with input from working groups of caregivers and dementia care experts, then chose automated text messaging software to deliver it.

information pills

When they piloted CuidaTEXT with 24 Latino caregivers, administering surveys before and after using the program, the researchers found that caregivers’ levels of distress and depression decreased, while their knowledge about dementia increased. During this time, challenging behaviors displayed by those in care, such as wandering and restlessness, also decreased. Caregivers said they were very happy with the program and none of them stopped using it at any time.

“They really loved what they called their ‘information pills,'” Perales-Puchalt said. “Instead of getting a big newspaper or something, they get their daily message, their ‘dose’. Another thing they mentioned is that even though they didn’t (respond) to the message, they still felt supported. And (they appreciated) the reminders that they needed to take care of themselves too.

To create CareTEXT, Perales-Puchalt and Ramirez secured funding from MARC. Their team led working groups with different caregiver populations, including African American and rural, to adapt some of the original CuidaTEXT messages.

To date, more than 60 caregivers have registered. “Caring can be a lonely quest. Users have reported feeling supported and accompanied knowing they are a text away from someone who is there to lend a hand,” Ramirez said.

Perales-Puchalt said he is considering getting funding to bring the program to Kansas as well as Missouri. He also thinks more broadly than that. “I think it should be accessible to everyone,” he said. “It’s simple because most are automatic. It must be offered at the national level so that everyone can use it.