Text-messaging program provides free support for caregivers of people with dementia
Available in English and Spanish, CareTEXT was developed by the KU Alzheimer’s Disease Research Center to help caregivers of people with dementia take care of their loved one as well as themselves.
Most people with long-term dementia in the United States are cared for at home, usually by family members. These caregivers have the physical burden of helping their loved one with countless daily activities, such as dressing and eating, while also navigating complicated medical and insurance issues and experiencing the heartbreak of watching their loved one’s disease rob them of their memory and personality. Often, caregivers face all of that in isolation, with little to no outside support.
“In the process of dementia, it’s not only the person with dementia who suffers, it’s also the whole family,” said Jaime Perales-Puchalt, Ph.D., MPH, assistant director of inclusive science, outreach and recruitment at the University of Kansas Alzheimer’s Disease Research Center (KU ADRC). “Approximately 40% of caregivers of people with dementia have either depression or anxiety disorders in addition to the other physical, mental and financial impacts of dementia.”
Thanks to Perales-Puchalt and his colleagues at the KU ADRC and the JUNTOS Center for Advancing Latino Health at KU Medical Center, some caregivers in the Kansas City, Missouri, area now have the opportunity to receive free support via a new text-messaging program known as CareTEXT. Through automated text messages delivered daily for six months, CareTEXT provides users with tips and information on dementia, behavioral symptoms, end-of-life-issues, self-care, social support and other topics to help them care for the person with dementia as well as themselves. They also can engage in live chats with a coach who can help them work through 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 version in Spanish, CuidaTEXT, is also available.
In designing the program, the researchers met an area of great need in a unique way. “To my knowledge, it’s the only text-messaging program for caregivers of people with dementia in the world,” noted Perales-Puchalt, who is co-principal investigator for the project along with Mariana Ramirez, MSW, director of the JUNTOS Center for Advancing Latino Health.
Accessibility is key
In addition to receiving daily automated messages, caregivers also can text a keyword and receive a text message response automatically. (Users receive a booklet about the program that contains a list of these keywords.) If someone texts the word “stress,” for example, she might receive a text message linking to a video about mindful meditation. Users can also text questions to the program’s bilingual coach, research associate Christina Baker, MPH.
“And sometimes we get messages not necessarily asking anything, from people just needing some support,” said Baker. “We are able to validate that, to say, ‘we hear you, we're here for you, we are here to support you.’”
The Spanish version, CuidaTEXT, was actually developed first. Perales-Puchalt was awarded 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 because of issues with transportation, language, finances and other barriers.
Perales-Puchalt and his colleagues chose a texting program, rather than an app, because of its relative accessibility. Texting is more cost-effective and simpler to use, does not require Wi-Fi and can be used anywhere at any time. They developed the content of the messages with input from working groups of caregivers and experts in dementia care, and then they chose an automated text-messaging software program to deliver it.
Pills of information
When they piloted CuidaTEXT with 24 Latino caregivers, administering surveys before and after they used the program, the researchers found that the caregivers’ levels of distress and depression went down, while their knowledge about dementia went up. Meanwhile, the challenging behaviors displayed by the people being cared for, such as wandering and agitation, also decreased. The caregivers reported being very satisfied with the program, and none of them quit using it at any time.
“They really loved what they called their ‘pills of information,’” said Perales-Puchalt. “Instead of being sent a big paper or something, they get their daily message, their ‘dose.’ Something else they mentioned is that even if they didn’t (respond to) the messaging, they still felt supported. And (they appreciated) the reminders that they should care for themselves, too.”
To create CareTEXT, Perales-Puchalt and Ramirez secured the funding from MARC. Their team led working groups with different populations of caregivers, including African-American and rural, to adapt some of the original CuidaTEXT messages.
So far, more than 60 caregivers have signed up. “Caregiving can be a lonely quest. Users have reported they feel supported and accompanied knowing they are a text away from someone who’s there to lend a helping hand,” said Ramirez.
Perales-Puchalt said he is looking ahead to securing funding to offer the program in Kansas as well as Missouri. He’s also thinking more broadly than that. “I think this should be available to everyone,” he said. “It’s simple because most of it is automatic. It needs to be offered at a national level so that everyone can use it.”
Do you have a loved one with memory issues?
If you are at least 18 years of age and caring for a person with dementia in Cass, Clay, Jackson, Platte or Ray counties in Missouri, consider the CareTEXT program, also available in Spanish. This text-messaging program provides support for caregivers of loved ones with dementia, all at no cost.
To participate, call 913-588-1851 or visit bit.ly/careTEXT.