INDIANAPOLIS, Ind. – When someone with dementia is in need of extra help and support, a caregiver steps in. According to the Centers for Disease Control and Prevention, 80% of the time, a loved one provides that care in their own home.
Doctors say taking on that role is hard work, stressful and can even lead to their own health issues.
Now, a new app is giving those caregivers the tools they need and a reminder to take care of themselves, too.
Dennis and Sheila Huntington have been married for 53 years.
“She always tells me how she likes having me around. Right, dear?” Dennis said.
Dennis spent decades as a minister. When it was time to retire, he felt called to do something else.
“Found out they need caregivers in homes for the elderly, and thought, ‘Maybe that’s what I could do and enjoy,’” he said.
He spent about 10 years doing that, then, Sheila was diagnosed with dementia, and now, he’s a caregiver in his own home.
“The caregiver is what we call the invisible patient,” said Richard Holden, a research scientist at Regenstrief Institute.
Holden and a team of many others have developed an app to help caregivers just like Dennis -- it’s called Brain CareNotes. Caregivers fill out a clinical evaluation, then, care notes are provided based on that assessment, then, a care coach works directly with the caregiver.
“We assess the caregiver just like we do the care recipient. We want to know their stress levels,” Holden explained. “We want them to track it over time. And the coach spends a lot of their time managing the care of the caregiver.”
One priority is making sure the caregiver takes a break to focus on something they enjoy.
“You need, as a caregiver, to be able to relax somewhat or it can overcome you,” Dennis said.
Dennis tries to spend about an hour a day woodworking. He also finds it helpful to talk to other caregivers. And even on the tough days, he knows the most important thing is that he loves his wife.
Holden said the Brain CareNotes app is currently being used by study participants. He and his team are working to develop more features. They don’t know yet when it will be available to the general public or what it will cost. They hope to get health insurance companies on board to cover that cost.