February 17 is National Trustees Day. This day honors people who selflessly take care of themselves and provide physical and emotional support to those who need it most.
More than four million Americans are caring for a relative who lives an average of 450 miles away. According to National Care Alliance that matches 15% of the approximately 44 million caregivers. This number is expected to grow in the coming years.
UC Davis Health neuropsychologist Alyssa Weekly knows the problems too well. In 2019, her grandmother developed Alzheimer’s while living in Southern California. Weekley and the rest of her family lived in Northern California and Washington State, a reality that brought on feelings of guilt and anxiety.
“In addition to safety issues, I was concerned about her ability to remember to go to the doctor’s appointments or communicate with friends, actions that would lead to a decrease in her independence and quality of life,” Weekley explained. “I was also very worried that we wouldn’t know when it was time to give her the help she needed.”
Growing need generates innovative solutions
The pandemic has shown us that communication is possible through technology. But Zoom, Skype, and Facetime will not replace face-to-face contact in assessing and managing the mental and physical well-being of a loved one.
“The population of older people with cognitive impairment is growing rapidly,” Weekley explained. “Technologies are needed to enable remote care and reduce the burden on family members and the healthcare system as a whole.”
To meet this need, Weakley developed Interactive Care, or I-Care. A unique web-based platform connects caregivers who live apart from care recipients with mild cognitive impairment and early Alzheimer’s disease. The goal is to help caregivers to monitor, support and participate in the daily activities of their loved ones. This includes remotely setting up medication reminders and motivating them to set and track brain health goals like exercise.
“The ability to follow up and communicate between a caregiver and a person struggling with cognitive impairment is critical to maintaining independence,” said Charles DeCarly, director Alzheimer’s Research Center. “Being able to follow up and support people with cognitive impairment, especially in the early stages of the disease, can make a huge difference to their health, safety and quality of life.”
After field testing and refining the computer program based on user experience, Weekley moves on to the next phase of his project: unobtrusive sensors to monitor home behavior of care recipients.
Center for Information Technology Research in the Public Interest and Banatao Institute (CITRIS) at the University of California recently awarded to her a $60,000 annual pilot grant to advance this research.
Technologies are needed to provide remote care and reduce the burden on family members and the health care system as a whole.
“Our team is going to develop markers for various important daily activities so that we can determine if there are deviations from normal patterns,” Weekley explained. “These changes may indicate a change in cognition or that the care recipient is becoming ill, which may require more attention from the caregiver.”
Innovation can improve communication and ease isolation
Weekley leads a multidisciplinary, multidisciplinary team. Shijia Pan, an electrical and computer engineer at the University of California, Merced, has designed brick-sized vibration sensors to be placed throughout the home. They will be located in places such as kitchens and bathrooms or bedrooms and hallways. Hao-Chuan Wang, a computer scientist at the University of California, Davis, uses machine learning to create an interactive visualization tool.
This technology gives caregivers a bird’s eye view of what’s going on inside the home without interference. While older people generally accept non-intrusive monitoring, they are less accepting of invasive monitoring such as microphones or cameras, especially in the bedroom and shower that these new sensors can access.
The sensor can accurately determine the type and quality of activity. For example, it can detect if a person washes their hands and forgot to use soap. It can tell if the shower water is too hot, which is a common problem among people with dementia, given their reduced sensitivity to temperature. The research team hopes to extend this work to determine other important daily activities such as taking medications, including correct dosage.
“One of the main goals of I-Care is to help build relationships that are harder to establish when people live in two different places. We believe the addition of behavioral monitoring will facilitate further communication, reduce feelings of isolation and loneliness, and result in improved care,” said Weekley.
By detecting abnormalities that may signal a change in cognitive function, it can also prompt intervention before the need for help reaches a critical point, which can be debilitating and costly.
Weakley plans to test I-Care with vibration sensors this spring and summer. She looks forward to additional grant funding and donor support. Healthy Aging in a Digital World Initiative eventually bring the solution to market. The tool, Weekley says, would have helped her with long-distance care for her grandmother, who has since moved to Sacramento.
“I believe that I-Care would have allowed my grandmother to stay longer in her home, enriched our connection, helped us make decisions about care needs, and reduced family tension,” Weekley added.