NIH-funded study to test the effects of first text-message support intervention for Latino caregivers of people with dementia

Caregivers of people with dementia are sometimes referred to as “invisible second patients” because their burden is so great that it often impacts their own health. In the United States, nearly half of family caregivers of people with dementia suffer from depression or anxiety disorders.

Among Latinos, who also are at higher risk for dementia than non-Latino white people, the proportion of caregivers who have depression or anxiety is even higher.

“Latinos have a higher prevalence of depression than non-Latino whites already and it increases over time, and that could be attributed partly to social determinants of health, such as not being able to afford health care and having less access to caregiving support,” said Jaime Perales Puchalt, Ph.D., MPH, assistant professor of neurology at the University of Kansas Alzheimer’s Disease Research Center.

Perales Puchalt is the principal investigator on a five-year, nearly $4 million grant awarded this year from the National Institutes of Health (NIH) to test a virtual way to provide more support to Latino caregivers. He and his colleagues at the KU Alzheimer’s Disease Research Center and the JUNTOS Center for Advancing Latino Health at KU Medical Center have developed CuidaTEXT, the first text-message program designed to support Latino caregivers of people with dementia. (In addition to the version in Spanish, there is an English version known as CareTEXT.)

CuidaTEXT delivers daily automated text messages with tips and information on caring for someone with dementia, end-of-life issues, self-care, social support and other topics. By submitting a keyword, users also can receive information to help them with that topic. And they can participate in live chats with a coach for help with specific problems. The goal is to help caregivers take care of themselves as well as care for the person with dementia.

A preliminary study, published in 2022, tested the program for a small cohort of 24 Latino caregivers. The results showed that the caregivers found the program highly usable, and their levels of depression and distress improved also.

This new study will test the program more broadly, among 288 Latino family caregivers of people across the United States as well as Puerto Rico. The caregivers must be at least 18 years of age and have some depressive symptoms, as measured by the Center for Epidemiologic Studies Short Depression Scale (CESD-10). These participants will be recruited via community and clinic referrals, flyers, social media and other methods, and they will be randomized into one of two groups. One group will be enrolled in the CuidaTEXT program and the other group, the control group, will not have access to CuidaTEXT until the study is completed.

The group enrolled in CuidaTEXT will receive approximately one text per day for six months, as well as additional on-demand texts on how to care for themselves and their loved one with dementia. The caregivers’ mental health will be assessed using the CESD-10 survey, at baseline and then again at three months and six months, with another follow-up measurement at seven months.

The researchers hypothesize that at the six-month mark, the caregivers’ depressive symptoms, as well as any distress they experience as a result of the behavioral symptoms of dementia such as agitated mood and wandering, will be reduced more in the group using CuidaTEXT than in the control group.

The study will also look to see if CuidaTEXT helps the participants’ approach to coping with caregiving, such as by taking action to improve a situation or by changing their perspective, as if the program improves their level of preparedness to be a caregiver.

If the researchers’ hypothesis is correct that CuidaTEXT is effective in reducing depression and distress and improving how caregivers cope, then the next step will be launching the program in community institutions and associations and figuring out how to best train those who will be implementing it.

Perales Puchalt would like the program to be available to anyone who needs it. “It needs to be offered at a national level by multiple community-serving entities so that everyone can use it," he said.

For more information on this study or to find out how to participate, email jperales@kumc.edu.