Neal Shah, CareYaya founder, seen here in the organization’s office. (Photo by Nayeli Jaramillo-Plata.)
Tuesday, May 14, 2024
By Nayeli Jaramillo-Plata
Renee Hedstrom said her heart broke when her husband, Carl Hedstrom, struggled to repeat five words.
Hedstrom became her husband’s caregiver after he was diagnosed with Alzheimer’s disease more than two years ago. Carl was put through the Montreal Cognitive Assessment, a test used to detect early signs of dementia. He was given five words and asked to repeat them after five minutes.
“And those five words are burned into your brain,” she said. “You’re rooting for them to say those words. So, when you first receive the diagnosis, your world kind of crashes down around you.”
CareYaya, a health-tech startup that provides home health care for medically vulnerable elderly individuals and children, received a grant to create the YayaGuide, the first artificial intelligence-powered personalized training program for caregivers like Hedstrom.
Carl is one of nearly seven million Americans who are living with Alzheimer’s. Neal Shah, CareYaya founder, said the disease doesn’t just impact the person diagnosed, which is one reason why he was motivated to create the YayaGuide.
“The whole family gets dementia because now, a spouse, an adult child or a grandchild will have to help that person manage care to keep them healthy and safe at home,” Shah said.
Through his own caregiving journey and experience with CareYaya, Shah learned that family members are thrust into this role with no preparation and minimal training.
“Family caregivers are, most of the time, not clinical people. So, if you’re like a 50-year-old person who’s the son or daughter of a 75-year-old mom or dad who got dementia, you are now suddenly effectively going to be a nurse aide,” Shah said.
After her husband’s diagnosis, Hedstrom said she was directed to various resources like the Alzheimer’s Association, the Dementia Alliance and the Duke family support group.
“Because you can’t process it at that moment, you need to go home and think about it and put things together, and sometimes you need to sit out in the car and cry,” Hedstrom said.
Many dementia caregivers are overwhelmed, according to Katherine Lambert, the Alzheimer’s Association regional leader for North Carolina, South Carolina and Georgia.
More than half of dementia caregivers said navigating health care is difficult, according to the 2024 Alzheimer’s Association survey,
The a2 Pilot Award
This spring, CareYaya received the AI/Tech + Aging Pilot Award (a2 Pilot), a national competition hosted by the a2 Collective, for its YayaGuide concept.
The award comes with a grant to create the YayaGuide, and Shah and the Care Yaya team will be working with others to develop the software and an AI and technology team at Johns Hopkins University to evaluate the effectiveness of the program.
Shah said the software development team has begun building the platform, and their goal is to have a finished product in about six months.
Shah said the YayaGuide is designed to help caregivers support their loved ones throughout their illness because there is a lot to learn – such as how to deal with cognitive issues, the loss of bodily function and challenging behavior.
“This is an ongoing thing because your care journey is going to be evolving, as the loved one you’re taking care of is changing,” he said.
Hedstrom said her husband is currently transitioning through a new phase.
“Some days, he’s totally Carl, he’s totally himself. And you’re like, ‘Yes, this is great’ and then the next day, it’s like, every five minutes, he’s repeating himself, and you’re like, that was short,” she said. “And you miss them, you miss who he was.”
Shah said the only options available to learn how to be an effective caregiver are certified nurse aide classes, which often include more than 100 hours of curriculum and can cost $800 to $1,000.
Artificial intelligence for bite-sized training
CareYaya is using AI to turn the traditional 100 hours of detailed training into two- to five-minute modules that meet caregivers where they are and help them upskill at their own pace.
“They just need to know what to do and, frankly, they don’t need all this training because they’re not going to work as a certified nurse at the hospital,” he said.
Shah said the inspiration for the YayaGuide was Duolingo, the world’s most downloaded education app. It offers free, personalized language courses for more than 40 languages in bite-sized lessons.
“What they did for language training is inspirational because up until their innovation, language training was similar to caregiver training right now,” he said. “It’s a bureaucratic, long process that sometimes people don’t have the time or the money for.”
Lambert said current dementia care workforce shortages are making it necessary to leverage new innovative approaches to support dementia caregivers.
“AI is showing great promise in providing this support. Some encouraging uses for AI include patient education, virtual assistance and caregiving training,” she said.
Caring for Caregivers
Family caregivers of people with dementia or Alzheimer’s are at greater risk for anxiety, depression and poorer quality of life than caregivers of people with other conditions, according to the Centers for Disease Control and Prevention.
“So anything that can be done to help family caregivers get more confidence, to get more skills, so that they can become better caregivers, to have kind of an easy outlet to learn that’s not intimidating can reduce the strain on their health,” Shah said.
Hedstrom said she learned that caregivers must prioritize their mental, physical and emotional health.
“You end up exhausted at the end of the day, and you’re feeling resentful, and then that just makes you feel bad,” she said. “Just taking care of yourself is so huge. It’s OK to cry. It’s OK to mourn the loss of the relationship you had.”
Still, she said she would continue caring for her husband as he has cared for her throughout the years.
“That man sat with me in the ER on our wedding night. And we went through such craziness,” she said. “But the way he took care of me, you know, that just spoke volumes about the kind of man I married. How could I do anything less for him?”