Until There Is a Cure, the “Treatment” Is Better Care

Funded by a grant from The Duke Endowment, UNC’s Division of Geriatric Medicine and Center for Aging and Health is training staff at UNC Hospitals Hillsborough Campus in best practices of dementia-friendly care. The Dementia Friendly Hospital Initiative has been piloted at Hillsborough and is currently expanding to four additional UNC Health Care Hospitals: NC Memorial Hospital in Chapel Hill; Pardee UNC Health Care in Hendersonville, Wayne UNC Health Care in Goldsboro, and Chatham Hospital UNC Health Care in Siler City. Eventually, nearly 4000 employees from multiple disciplines and departments will be trained in dementia-friendly care across all five hospitals.

Dr. Busby-Whitehead with Nutrition and Food Services Dementia Champion Tracy Thorp and Clinical Nurse Education Specialist Krista Wells, featuring the "dementia-friendly food tray.'
Dr. Jan Busby-Whitehead with Nutrition and Food Services Dementia Champion Tracy Thorp and Clinical Nurse Education Specialist Krista Wells, featuring Hillsborough hospital’s “dementia-friendly food tray.’

Dementia and Alzheimer’s Disease is the 6th leading cause of death nationally and the 4th leading cause of death among those 65 and older in North Carolina. Dementia and Alzheimer’s Disease are the only leading cause of death for which there are no effective treatments or cures.

The hospital is a confusing and frightening place for patients with dementia. Because they often have trouble understanding their surroundings, patients can get confused about whether it is day or night. They can struggle to order or eat meals. They may have trouble asking for help to go to the bathroom, or to find relief from pain, or to use a phone to call a family member. Patients who lack the ability to understand what is happening to them can also react in ways that negatively impact care. Reactions span a range of behaviors such as yelling, striking out, pulling at IVs, or trying to leave their beds and rooms.

The Dementia Friendly Hospital Initiative trains all staff – from physicians and advanced practice providers to food service workers, security officers, and administrators – who interact with patients in strategies to improve quality and safety. Using specific training and clear communication can immediately help to minimize a dementia patient’s confusion and fear and create a more productive environment for treatment.

The program is aligned with the UNC Health Alliance, UNC Senior Alliance, and the National Committee for Quality Assurance, and inspired by hospitals such as The Outer Banks Hospital, community efforts like Orange County’s Dementia Friendly Business program, and thousands of caregivers across our state. A key link in the chain of better dementia care includes connecting discharged hospital patients to existing community resources, for example, NC’s Area Agencies on Aging.

Dementia Care Needs

With adults over 75 the fastest growing segment of the population, and with Alzheimer’s and related dementias affecting 1 in 3 adults over 85, dementia-friendly care is critical. There are approximately 170,000 North Carolinians living with dementia, a number that will grow to 260,000 by 2037. Patients with dementia pose a variety of challenges for hospitals, communities, and families, including:

Dementia Friendly Hospital Initiative Advisory Meeting at UNC Hospitals Hillsborough Campus
Dementia Friendly Hospital Initiative Advisory Board Meeting at UNC Hospitals Hillsborough Campus
  • prolonged stays
  • poorer health outcomes
  • higher costs
  • increased readmissions
  • increased mortality rates

Program Training and Goals

UNC Health Care is the first major health care system in the state with plans to deliver hospital-wide training to multiple partnering hospitals and position for broad, system-wide dementia-friendly education and training. Program goals are to:

  • deliver dementia-friendly training to clinical and non-clinical staff
  • improve hospital quality and safety for patients and families
  • support timely, cost-effective, and compassionate hospital care for older adults living with dementia
  • shorten patient stays and help them avoid hospital re-admittance

The first phase of training is computer-based* and includes clinical staff such as physicians, nurses, pharmacists, physical therapists and occupational therapists, and non-clinical staff such as housekeeping, food services, and security.

After staff and clinicians complete the computer-based modules, they continue to build knowledge through moderated discussions exploring potential scenarios with patients. Trainers offer clinical perspective and communication strategies, while giving guidance on specific questions posed by participants.

What a Dementia Patient Experiences

John Gotelli, Geriatrics Nurse Practitioner at UNC Hospitals Hillsborough Campus
John Gotelli, Geriatrics Nurse Practitioner at UNC Hospitals Hillsborough Campus

Somebody with dementia, says John Gotelli, MSN, GNP, a Geriatrics-trained Nurse Practitioner at Hillsborough, “lacks the ability to process information that you and I take for granted. So with a foodservice person who comes in to deliver a tray of food, you or I, if we were in the hospital, would understand that interaction. Someone with dementia may think that that person is coming in to poison them.”

With dementia, the use of language and verbal ability is often impacted first, so patients struggle to both understand information they receive and to express their wishes and needs. A dementia patient who is fearful, confused, or in pain may not be able to describe what they’re experiencing. They may not understand why they are at the hospital, how they got there, or what the motives are of the people who keep entering their room.

“Imagine if you don’t know what’s going on, you’re in this place, it’s very bright or it’s dark, you’re connected to wires, people are doing things to you … With a dementia patient their go-to is often to lash out and tell people to ‘leave me alone, stop bothering me,’” says Krista Wells, MSN, RN, CCRN, Hillsborough Hospital’s Clinical Nurse Education Specialist.

Without awareness of what the dementia patient actually experiences, staff focus first on stopping behaviors, rather than trying to understand what’s creating the problem from the patient’s perspective. If difficult and unsafe behaviors (including striking out, pulling IVs, or trying to leave the room) can’t be stopped, medication is a too-frequent default.

And with medication comes increased risk for delirium, falls, and further cognitive decline. Dementia-friendly training helps staff create an environment of trust among patients. With greater trust comes more cooperation and fewer difficult behaviors that can lead to over-medication and poor health outcomes after hospitalization.

Krista Wells, MSN, RN, CCRN, and Clinical Nurse Education Specialist at UNC Hospitals Hillsborough Campus describing DFHI at a dementia and Alzheimer's caregiving conference in February 2019.
Krista Wells, MSN, RN, CCRN, and Clinical Nurse Education Specialist at UNC Hospitals Hillsborough Campus, speaks on the Dementia Friendly Hospital Initiative at a regional caregiving conference.

“We Have to Change”

The benefit of training all staff who interact with patients is that every encounter with dementia patients now has a better chance of going smoothly. Dementia-friendly staff have a new set of skills to use in a variety of situations and are empowered to act with greater empathy and understanding.

“The biggest piece of this is awareness and understanding,” says Jenny Van Gils, OTR / L, an occupational therapist at Hillsborough. “We have to change our behavior, because they can’t change theirs.”


*Computer-based training modules provided through CARES® Dementia-Friendly Hospitals™: Preventing Adverse Events from HealthCare Interactive