The responsibility of caring for loved ones with Alzheimer's disease or dementia can be overwhelming - physically, mentally and financially. In 2015 there were an estimated 33,000 Nebraskans with the diseases. This number is projected to increase by 21 percent in 2025 to 40,000.
"There are Nebraska family members who care for loved ones with Alzheimer's or dementia who are going it alone with little or no resources or training," said Steve Bonasera, M.D., Ph.D., associate professor of geriatrics at the University of Nebraska Medical Center. "The study provides the opportunity for caregivers to be networked with advice, expertise and resources from some of the top specialists in the world in Alzheimer's and dementia.
"Some caregivers are really stressed out. We will find out what needs they have, teach them what to expect and put together a plan on how to work with their health providers," Dr. Bonasera said.
He is co-investigator of a $10 million grant with the University of California San Francisco to bring respite to caregivers.
The grant, awarded by the U.S. Centers for Medicare & Medicaid Innovation, created a family-centered model that provides around-the-clock online education and consultation for patients with Alzheimer's disease and their caregivers. It uses phone- and web-based tools. Some patients will use remote monitoring with smart phones and home sensors.
The study will compare the current standard of care model for caregivers in a control group to the new model being used in the study to determine if the new model improves the quality of life of both patients and caregivers. The hope is that the interventions will keep people with dementia at home longer and at the same time lower family and caregiver stress.
The model, called Dementia Care Ecosystem, will not replace clinicians, but rather will deliver to patients and their families, educational resources developed over the past decade by UCSF's Memory and Aging Center and UNMC physicians. This will help clinicians monitor their patients.
Each patient will be monitored and will have a navigator who will check in with the caregiver by telephone or with a personal visit. The navigators are supported by nurses, social workers and pharmacists with expertise in dementia care.
The navigators will triage calls, making sure that patients see nurses and doctors when necessary and help with other things that don't require medical expertise, such as a hazardous situation in the home that could cause the patient to fall. In addition, resources are available to help families 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.
Some patients in the study will use smart phones and electronic wristbands to record activity levels, count the number of steps they take and measure how far they range from home.
The system also will monitor the drugs that patients take and flag high risk and inappropriate medications that can send patients with certain forms of dementia to the emergency room. Initial projections are that the improved caregiver support and 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 by six months.
For information about the study, contact Jackie Whittington at (402) 559-6117 or firstname.lastname@example.org