Dementia Care “Ecosystem” to Bring Online Respite to Caregivers

UC San Francisco and the University of Nebraska Medical Center have been awarded a $10 million grant from the Centers for Medicare & Medicaid Innovation to create a new web-based model of dementia care. It will provide around the clock consultations for patients and their families, online education and, for a subset of patients, remote monitoring with smart phones and home sensors.

The Dementia Care Ecosystem will not replace clinicians, but rather bring educational resources developed over the last decade by the UCSF Memory and Aging Center (MAC) to patients and their families, while enabling clinicians to monitor their patients from afar.

“Our hope is this is going to radically improve the way dementia patients are cared for,” said Katherine Possin, PhD, who is an assistant professor of neuropsychology at UCSF. “We hope we’ll show this works, and that it can be adopted nationwide.”

Each patient will have a navigator, who will check in by telephone or with a personal visit, as well as by monitoring communication with patients and their families through an Internet dashboard, created with the help of Salesforce. Navigators will be people without a formal medical degree and will be supervised closely by nurses, social workers and pharmacists with expertise in dementia care.

These navigators will triage calls, making sure that patients see nurses and doctors when necessary and helping with other things that don’t require medical expertise, such as a hazardous situation in the home that could cause the patient to fall. Meanwhile, patients and their families will be able to get training online to help make financial plans and work through tough medical decisions before their loved ones have reached a crisis stage.

Researchers hope to create a virtual care system that is supportive enough to protect the mental and physical health of caregivers, who tend to neglect their own needs. If caregivers learn to cope better, patients may be able to remain at home longer before moving into assisted living. Last year, according to the Alzheimer’s Association, about 15.5 million people in the United States were caring for friends and family members with dementia. Nearly 60 percent said the work was highly stressful and more than a third reported symptoms of depression.

“Our ecosystem will have wisdom and experience continuously piped in every day to caregivers who are overwhelmed,” said Bruce Miller, MD, director of the MAC, who holds the A.W. and Mary Margaret Clausen Distinguished Professorship in Neurology at UCSF. “Typically, these people have a hard time getting through to anyone in the medical system.”

Some patients in the study will have an added level of technology-based care. They will use smart phones and electronic wristbands to record their activity levels, count the number of steps they take and measure how far they range from home. And a small number will have sensors placed inside their homes to detect behavior changes that could signal the onset of a health problem, like being up all night, staying in bed all day or going to the bathroom more times than usual.

“If someone, instead of getting up two times a night, is getting up four or five times a night, we might send a nurse the next morning to their home to get a urine sample, and if it’s bad start the patient on antibiotics,” said Steve Bonasera, MD, PhD, an associate professor of geriatrics at UNMC, who did his fellowship at UCSF. “We’re going to be monitoring people who are a seven- or eight-hour drive from my office in Omaha.”

The system will also monitor the drugs that patients take and flag high risk and inappropriate medications, such as antipsychotics and benzodiazepines that can send patients with certain forms of dementia to the emergency room. It will also flag medications that should not be combined.

Initial projections are that the improved caregiver support, more continuous access to medical help and medication management will reduce emergency room visits by a half, cut hospitalizations by almost a third and delay the move into a nursing home for six months. This is projected to save $4.3 million over the three years of the grant.

The MAC already has a well developed website that attracts traffic from around the world. Some of the center’s recorded lectures on caring for people with dementia have been viewed hundreds of thousands of times. Researchers said that once families have easy access to educational resources, office visits will become less pressured and patients and their families will be able to take more time to absorb information and make important decisions.

“The idea of 24/7 telephone access to clinicians with expertise in dementia has really resonated with caregivers,” said Jennifer Merrilees, RN, PhD, a clinical nurse specialist at the MAC who will oversee the care that is dispensed online. “That’s what’s really made their faces light up when I’ve described it to them.”

Beginning this fall, 2,100 patients, all diagnosed with varying stages of dementia, will be enrolled through San Francisco General Hospital and Trauma Center, UCSF Medical Center and the UCSF MAC clinics and Chinatown Clinics, as well as UNMC and other service organizations in Nebraska serving the elderly.

UCSF is the nation’s leading university exclusively focused on health. Now celebrating the 150th anniversary of its founding as a medical college, UCSF is dedicated to transforming health worldwide through advanced biomedical research, graduate-level education in the life sciences and health professions, and excellence in patient care. It includes top-ranked graduate schools of dentistry, medicine, nursing and pharmacy; a graduate division with world-renowned programs in the biological sciences, a preeminent biomedical research enterprise and two top-tier hospitals, UCSF Medical Center and UCSF Benioff Children’s Hospital San Francisco.