June 14, 2012
By Cori Ast
|Kristine Williams, Ph.D., RN|
Today, more than 5 million Americans are living with Alzheimer's disease and related dementias. Kristine Williams, Ph.D., RN, wants these individuals to get the best care possible — and she believes that starts with helping the more than 15 million family members providing care for their loved ones with dementia at home.
"It's very stressful to be a caregiver," says Williams, associate professor at the University of Kansas School of Nursing. Williams says the stress can be related to a loved one's symptoms, such as losing the ability to care for oneself or communicate, and is exacerbated if the individual with dementia develops behaviors such as aggression or wandering.
Anne Arthur, executive director of the KU Alzheimer's Disease Center, says a patient could live with a dementia diagnosis for eight years or more, and that extended duration of caregiving amplifies the negative consequences for family members. "Watching your loved one deteriorate is stressful, but there's not a set time point that this caregiving experience is going to end," explains Arthur, MS, APRN.
Studies have shown that family members caring for patients with dementia have increased rates of mortality and morbidity, which is why Williams designed a study to support them.
"This is a completely new role for the caregiver, so the caregiver needs education and help in understanding the disease and how to handle different situations that come up in the disease process," says Arthur, a co-investigator on the study.
Each family in the study will have an in-home monitoring system consisting of a laptop computer with a camera and remote control that can be easily moved to any room in the house. When a caregiver experiences a behavior that he or she would like help addressing, the caregiver presses "record" on the remote. The system captures the episode — including the 5 minutes before — and the video is automatically uploaded to a secure online server. Every week, Williams and her team of dementia care professionals assess the recorded incidents to provide individualized suggestions to the caregiver.
"It's extremely helpful to our team to see what the home and interaction is like, to see if we can identify something that may have triggered the incident," says Williams.
The technology used for this study was originally developed for children with autism. "To our knowledge, this is the first adaptation of the technology for support of caregivers of people with dementia," says Williams, who is also an Associate Scientist for the Gerontology Center in the Life Span Institute at the University of Kansas in Lawrence.
The study is currently being piloted by Kansas City-area caregivers of patients at KU's Alzheimer's Disease Center, thanks to pilot funding from Frontiers: The Heartland Institute for Clinical and Translational Research and the University of Kansas School of Nursing. To date, four caregivers have participated in the study, which can support up to four caregivers at one time.
Although the study is being piloted in the Kansas City area, Williams believes her study could improve the quality of care for patients with dementia in rural areas too.
"Using already available telehealth technology could really help people who are living in isolated areas get professional support for being a caregiver," says Williams. The study plans to explore using other telehealth resources so the team can meet virtually with caregivers to provide feedback, which is currently given in-person or over the phone.
Williams is seeking to improve the technology to be ready for expansion. Her project is one initiative in U.S. Ignite, a private-public partnership to promote development of applications for ultra-fast broadband, such as Google Fiber, that will transform industries such as health care, energy, and education.
"The goal of U.S. Ignite is to develop partnerships and collaborations that will develop applications to work on the next generation of high-speed broadband," says Steve Fennel, director of telecommunications outreach at KU Medical Center.
As part of the initiative, which is sponsored by the White House Office of Science and Technology Policy and the National Science Foundation, Williams plans to enhance her in-home monitoring project using advanced technologies developed at Case Western Reserve University and the University of Missouri.
"This could really make a difference for people caring for their loved ones with dementia at home," says Williams. "We can help relieve some of caregivers' stress by making them better equipped to care for their loved ones at home."
Williams also believes the study may have an extra benefit: helping to save money by reducing the number of health care provider visits requested by the family caregiver. Informal caregivers for people with dementia are estimated to save the U.S. health care system $120 billion annually. Studies show that family caregivers who feel more comfortable with their role may also delay choosing a nursing home, which can cost more than $200 per day.
"To care for a patient with dementia, it's about caring for the person caring for the patient," says Williams. "We are giving really individualized professional feedback to those caregivers to empower them to manage their loved one's care."