New app to help caregivers – NBC 5 Dallas-Fort Worth

When someone with dementia needs extra help and support, an informal caregiver steps in. According to the CDC, a loved one provides that care in their own home 80% of the time. Doctors say taking on that role is hard work, stressful and can even lead to their own health problems. Now a new app gives these 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 she enjoys having me around. Right, honey?” Dennis asks his wife.

Dennis was a minister for decades. When it was time to retire, he felt called to do something different.

“I found out they need caregivers in retirement homes and thought, ‘Maybe that’s what I can do and enjoy,’” he says.

He did that for about ten years, then Sheila was diagnosed with dementia, and now he is a caregiver in his own home.

“The caregiver is what we call the invisible patient,” says Regenstrief Institute researcher Richard Holden, PhD.

Professor Holden and a team of many others have developed an app to help caregivers like Dennis – the app is called Brain CareNotes. Healthcare providers complete a clinical assessment. Care notes are provided based on that assessment. A care coach then works directly with the care provider.

Professor Holden explains: “We judge the care provider just as we judge the care recipient. We want to know their stress level. We want them to track it over time. And the coach spends a lot of time managing the caregiver’s care.”

One priority is to make sure the caregiver takes a break to focus on something he or she enjoys.

Dennis says: “As an informal caregiver you have to be able to relax a bit, otherwise it will take you by surprise.”

Dennis tries to spend about an hour a day on woodworking. He also finds it helpful to talk to other health care providers. And even on difficult days, he knows that the most important thing is that he loves his wife.

Professor Holden says the Brain CareNotes app is currently being used by study participants. He and his team are working to develop more features. They don’t yet know when it will be available to the general public or what it will cost. They hope to get health insurers on board to cover those costs.

Contributors to this news story include: Lindsay Dailey, producer; Kyle Fisher, videographer; Matt Goldschmidt, editor.