Study seeks dementia patient caregivers
More than six million Americans suffer from Alzheimer’s disease and related dementias. And most of them (80%) still live at home, cared for by family members, according to the Centers for Disease Control.
“The caregiver is on their own,” said Laura Gitlin, PhD, dean emerita of Drexel University’s College of Nursing and Health Professions. “Families are always on their own to figure out how to provide care and support the person throughout the disease process.”
To help those families, Gitlin and her colleague, Helen Kales, M.D., a geriatric psychiatrist at UC Davis, developed a new online tool called WeCareAdvisor. Now, with funding from the National Institute on Aging, they’re testing the online platform in a study in which busy caregivers can participate entirely over the phone.
Gitlin and Kales have worked with thousands of families and have devised many successful ways to support people living with dementia. They’ve treated common dementia-related symptoms, including agitation, wandering, repetitive questioning or shadowing their caregiver.
“These behaviors occur throughout the dementia process and can be very disturbing for the person and their caregiver,” Gitlin said.
She and Kales hope WeCareAdvisor can “help families manage these behaviors,” so they’re testing it with the people who need it most — family caregivers.
“We developed it with lots of input from family caregivers as well as providers,” said Gitlin, co-principal investigator of the study.
How the online tool works
Caregivers who enroll in the study can access WeCareAdvisor on a smartphone, computer or tablet. They can use it around the clock to learn about dementia and solve behavioral challenges.
Let’s say it’s the middle of the night, and a husband with dementia grows agitated and tries to leave the house. His wife quickly checks her phone for a solution.
Instead of flipping through a book, people can use WeCareAdvisor to get the information they need on the spot. The tool provides “access to strategies and information about dementia 24/7, whenever a caregiver needs it,” Gitlin said.
WeCareAdvisor uses the DICE approach, which stands for Describe, Investigate, Create and Evaluate, Gitlin explained.
First, the caregiver is asked a series of questions to describe the behavior — say, wandering. Then caregivers are asked yes/no questions to investigate the behavior, such as, “Was there a sudden onset? Has there been a change in medication?”
Within seconds, the tool will create a plan that includes easy-to-use strategies to try. After caregivers try the strategies, the tool asks them to evaluate how well they worked. It can also offer additional strategies if they’re needed.
What can participants expect?
For the study, which is enrolling now, caregivers are randomly assigned to one of two groups. One group immediately learns how to use the tool and starts using WeCareAdvisor. Training takes just 15 to 30 minutes, Gitlin said, because the tool is fairly simple to use.
The second group receives training and access to the tool three months later.
The research team will interview all caregivers four times: at the beginning of the study, one month later, three months later, and then six months later.
“Everyone has an opportunity to use WeCareAdvisor and evaluate it,” Gitlin said.
Participants will give feedback to researchers, who also will collect information regarding how often caregivers used the tool.
“If it’s effective,” Gitlin said, “we definitely want to make this available to families.”
For more information about this study, or to enroll, email WeCare@drexel.edu.