What Does Dementia Feel Like?
Michelle Kimzey places empathy at the front of the nursing classroom to improve dementia care.
Imagine wearing ungainly mittens, heavy headphones, blurry eyeglasses and shoes with lumpy insoles. Someone is speaking, but you can barely hear them above the white noise. You know you’re supposed to do something, but you don’t know what. You make clumsy motions and start to wander. In all respects, you look like someone with dementia.
Nursing students in Michelle Kimzey’s course on dementia find themselves in this predicament, thanks to an eight-minute simulation designed to give them a taste of what it’s like to live with impaired faculties.
Dementia, which includes Alzheimer’s disease as well as numerous other subtypes, can lead to cognitive problems and sensory difficulties that can make understanding instructions — and even communicating basic needs — a challenge.
Those disabilities can result in behaviors that frustrate and annoy caregivers.
By helping participants glimpse these patients’ inner worlds, the Virtual Dementia Tour can lead nursing students to feel profound empathy, said Kimzey, an assistant professor of nursing. “There were tears — I was so blown away by [students’] reactions.”
“For a lot of [students], they’ll say that this is their turning point,” said Sydney Burke, who took Kimzey’s course last year. “You can see how easily people living with dementia can get overwhelmed.”
The simulation, an evidence-based, trademarked experience offered by the educational nonprofit Second Wind Dreams, is just one element of the course. The elective for nursing students also offers experiential learning at a memory care facility, interactions with actors playing patients, and guest speakers, including one who is himself living with dementia.
“We expect people with dementia to be able to keep up with the way that we perform routine care. But they can’t do that,” said Chelsea Martin ’20, who is embarking on a career in oncology and geriatrics wards. “As nurses, we can alter our care to fit people with dementia.”
Caregivers often label people with dementia as difficult and may ignore or rebuff their attempts to communicate. Kimzey said she wants students to understand the roots of the challenging behaviors — and that nurses can inadvertently be part of the problem. “We don’t communicate with them correctly. We’re always asking them, ‘Do you remember?’ They don’t, so why are we asking them that? We don’t meet them where they are.”
Nurses can take steps to prevent such mutually frustrating experiences, said Burke, Martin and other students who have taken Kimzey’s course.
For example, when helping someone with dementia put on a coat, nurses can stand in front of, instead of behind, the patient and offer visual cues. Feeding a person with dementia goes better if the caregiver places a hand on the patient’s hand and guides the spoon. Eliminating background noise and ensuring rooms are well-lit can help. And offering simple choices lets people feel empowered without being overwhelmed.
Anyone, not just nurses, can learn such things. In fall 2019, students led a free public seminar in Fort Worth to raise awareness about dementia.
The Harris College of Nursing & Health Sciences has earned a Dementia Friendly designation, meaning that a community, business or organization has pledged to educate its members about how to be empathetic and proactive with people living with dementia.
Students hope these efforts will help people understand the sometimes perplexing behaviors associated with loss of cognitive ability.
“If they’re acting out, you have to attribute it to the disease process and not to who they are as a person, and you can’t take it personally,” said Burke, who helped found Students for a Dementia Friendly TCU.
“A lot of it is because they need something: They need some pain relief. They need some company,” she said. “Finding what you can give them — not just medication, but attention, someone there to interact with them — could greatly improve lives.”
Taking the Lead, Filling a Need
Kimzey, a nurse who returned to school for a master’s degree after raising children, became interested in the disorder after witnessing a relative with dementia receive subpar hospital care. From the experience, she grew curious about dementia and ultimately wrote her dissertation on nursing students’ knowledge and attitudes relating to the condition.
She started teaching at TCU in spring 2017 and began offering the dementia elective the following year. From five students the first semester, enrollment rose to 18, then 26 students. Martin and Burke are among the many students who have become certified through the National Council of Certified Dementia Practitioners, which recommends that at least one such person be present on each health care shift.
Kimzey said her students’ dementia education is an asset in the job hunt.
Among people in the United States age 65 and older, 5 million — almost 10 percent — are estimated to have dementia.
“I’m so excited that it’s not just me that’s interested,” she said, adding that people with dementia “want to be heard. They don’t want to be forgotten. They’re very courageous people.”
Nurses who are comfortable caring for people with dementia will be sorely needed. Though the condition is not an ordinary consequence of aging, it is more common in the elderly, and as U.S. residents age, the proportion living with one or more types of dementia is rising. Among people in the United States age 65 and older, 5 million — almost 10 percent — are estimated to have dementia. By 2060, there will likely be 14 million, according to the Centers for Disease Control and Prevention.
“It’s going to take all of us to help,” Kimzey said. “The sheer numbers are going to be huge.
“If you know how to provide care for somebody with dementia — because it is person-centered, empathetic — you’re a great nurse for everybody. With or without dementia, it doesn’t matter. You’re seeing them for who they are.”
How to Help
The Rethinking Dementia: Awareness/Education/Research fund is designated for the dementia program in the Harris College of Nursing & Health Sciences. The initiative’s goals are to advance the understanding of dementia in the community, raise awareness of the disease and remove the stigma, and keep people living with dementia as the primary collaborator in their care and engage them in education and research. For more information or to donate, contact Laura Patton, director of development for Harris College, at email@example.com or at TCU Box 297044, Fort Worth, TX 76129.