Lori Stanton’s 89-year-old mother, Elli, has a neurological disorder where fluid builds up in the brain. In many cases, including Elli’s, it’s accompanied by severe dementia. Until recently, Stanton cared for her mom in her New Tampa home.
“It’s all-consuming, it’s morning to bedtime and then all night,” Stanton said.
Due to dementia destroying the part of the brain that contains the "sleep center," which tells our bodies when it's time to sleep or wake up, Elli would wake up as many as four times a night. To alert Stanton or her husband to get up and help Elli, they installed an alarm on her bed.
“It’s very loud and it would frighten my mom, and it would startle me," Stanton said, "and then trying to get mom calmed down and back into bed was not worth having a device like that.”
Baby monitors didn’t work either, as any little noise from Elli would wake the couple. Eventually, Stanton’s fears were realized one night when her mom got out of the house, fell and broke her arm. Stanton’s resulting hypervigilance - an exaggerated awareness of what's happening around her - made it impossible for her to sleep, which eventually led to her own own health problems, including heart palpitations and a panic attack that hospitalized her briefly.
Now, USF Health is trying to help caregivers like Stanton through an almost $2 million, National Institute on Aging-funded study. Principal researcher Dr. Meredeth Rowe is an endowed chair with the USF College of Nursing.
"What we’re trying to do really is to unpack what does caregiver stress mean, and the two aspects that we’re looking at now is sleep and vigilance,” Rowe said.
Since previous research has shown a lack of sleep and almost non-stop hypervigilance leads to an increased risk of heart disease in caregivers, Rowe wants to see if improving sleep patterns lowers that risk. She's using a pair of interventions to do so. First is CareAlert, a home monitoring system designed by Rowe and Caregiver Watch, LLC. Rowe has been working on the product since 1999.
“It’s all based on motion sensors that are placed above doorways throughout the house and magnetic switches on the doorway that tell you when you open a door, and a bed occupancy sensor that’s underneath the bed of the person with dementia," Rowe said.
See a demonstration of how the CareAlert system works here:
While Rowe says tests have shown the CareAlert system has led to an 86 percent reduction in nighttime injuries for subjects with dementia, the concern over caregivers' sleep remains. So all participants in the study will also be enrolled in one of two randomized sleep behavioral therapies.
Unfortunately, the CareAlert system comes a little late for Lori Stanton. Her mother's needs have increased to the point that Stanton can't meet them on her own, so she's moved into an assisted living facility. However, that’s not stopping Stanton from encouraging friends facing similar challenges with in-home care from using the system.
“Had it been available for me, it would have been a blessing because I could have had something that was gentle for my mom that wouldn’t be intrusive for her," Rowe said. "I could have gotten some sleep; it just seemed like a godsend.”
Stanton has taken one thing away from her experience caring for her mother – at the age of 52, she’s starting nursing school at USF later this month.
USF Health is looking to sign up around 60 caregivers to take part in the study. Subjects need to live within a hundred mile radius of Tampa since the researchers will be coming to their homes.
"Every visit that we do, we go to them and we conduct all the research right in their house so they don’t have to leave," Rowe said. "We bring a second person with us to every home visit to watch the person with dementia.”
In addition, the sleep therapy will be delivered via Skype. All study participants will also be allowed to keep the CareAlert system. Rowe is currently seeking funding to help bring the system to market; it's projected to cost around $1,200.
For more information about the study, contact USF College of Nursing Research Project Manager Brandi Mallek at (813) 974-1827 or firstname.lastname@example.org. Find out more about who should enroll in the study in this video: