“I’ve had the opportunity to see dementia care from different perspectives and in different settings,” says Andrea Gilmore-Bykovskyi, PhD, RN, an alumna of and incoming assistant professor at the University of Wisconsin–Madison School of Nursing.
While an undergraduate student, Gilmore-Bykovskyi worked as a CNA in a nursing home.
“To this day, that probably was my most profound clinical experience,” she says. “It was where I first learned what dementia was. It was where I first worked with people who had dementia. I witnessed first-hand the symptoms that people with dementia experience at a remarkably high prevalence, and the challenges that caregivers have in addressing these symptoms. I noticed that some caregivers had effective strategies to alleviate these symptoms, while others seemed to struggle with them.”
Those early experiences continue to inform Gilmore-Bykovskyi’s current research goals: to reduce troublesome symptoms for people with dementia, to improve care and symptom management for people with dementia as they transition between care settings, and to improve quality of life for people with dementia and their caregivers.
In her work, Gilmore-Bykovskyi focuses on the non-cognitive symptoms frequently experienced by people with dementia, especially behavioral symptoms such as agitation, care resistance and aggression.
“When we think about dementia, we think about memory loss,” Gilmore-Byskovskyi explains. “But non-cognitive symptoms are particularly important. Everyone who has dementia will get them. And once you experience a symptom, it tends to have some level of persistence. Studies that follow people over time show that agitation is an incredibly persistent symptom, as is apathy.”
Behavioral symptoms “are the strongest independent risk factor for decisions to institutionalize people with dementia,” says Gilmore-Bykovskyi. “They’re associated with increased care costs, and with remarkable increases in caregiver stress, burden and depression for family caregivers. They can also lead to potentially avoidable inappropriate medication.”
“What’s really important,” she continues, “is that these symptoms are likely treatable. People with dementia don’t have to experience them at such high rates. They’re not attributable to cognitive impairment. There are other things that are causing these symptoms that we need to be thinking about and addressing.”
Mounting evidence, as well as her clinical experience, suggests “these symptoms are an attempt to communicate an unmet need,” says Andrea Gilmore-Byskovskyi. “As someone has this progressive neurodegeneration, they have a limited ability to communicate their needs, even identify their needs, or influence their environment and the people in their environment to have their needs met.”
Untreated pain is one of the most common unmet needs of people living with dementia.
“Pain management in people with dementia and in older people overall is very often inadequate,” says Gilmore-Bykovskyi. “If you have dementia, it’s unlikely that someone’s going to ask you about your pain. Pain is under-treated in people with dementia, and it’s associated with behavioral symptoms. We know from recent studies that systematic treatment of pain produces significant reductions in agitation. Just scheduling Tylenol can lead to significant decreases in behavioral symptoms.”
One of her studies (covered in our summer 2013 issue) looked at how nurses decide to treat suspected pain in people with dementia.
“We found that nurses were really struggling to distinguish behavioral symptoms from behaviors that are indicative of pain,” says Gilmore-Bykovskyi. “This leads to under-treatment of pain. Nurses were identifying a change in behavior and doing anything to resolve the behavior, without a systematic approach to address the most common contributing factors,” such as pain.
She recommends the “A B C” approach to identify and address unmet needs. Caregivers start by describing one Behavior exhibited by a person with dementia. Questions to ask include if the behavior is safe or dangerous, how often it occurs, how long it persists, and who it affects. Next, caregivers consider the Antecedents, what conditions or actions occur prior to the behavior. Questions to ask include where the behavior occurs, what else is happening, who else is present and what they are doing. Lastly, caregivers identify the Consequences or what happens following the behavior. Questions to ask include what the person with dementia does next, how others respond and if any reactions affect the behavior.
Another helpful tool is the Pain Assessment in Advanced Dementia Scale (PAINAD). To use this tool, caregivers observe the person with dementia for five minutes, and then score the person’s breathing, vocalization, facial expression, body language and whether they can be consoled or redirected. The final score indicates how likely it is that the person with dementia is in pain and how severe the pain may be.
Even small improvements in identifying and meeting the needs of people with dementia can significantly improve quality of life.
To illustrate that point, Andrea Gilmore-Bykovskyi imagines what being in a hospital might be like for a person with dementia.
“If I have moderate to severe dementia, I might have pain, but it might be very hard for me to identify that’s what’s causing some of my problems,” she says. “I probably don’t have all the words to communicate it. I might do some things that are inappropriate. Maybe I pull my IV out, and then I get new medications for that. Those medications probably make me feel bad. I haven’t seen anyone familiar in four days. I don’t know that I’m in a hospital, and now I’m being moved to a nursing facility. Maybe the hospital did something that made my symptom management better. Maybe I got Tylenol, but the hospital didn’t tell the nursing staff in the nursing facility that that helped.”
Gilmore-Bykovskyi’s research aims to improve care across those transitions, and to inform staff caring for the person with dementia.
Once the person with dementia enters the nursing home, “New people are hopefully learning who I am as a person, in order to help me,” Gilmore-Bykovskyi says. “Hopefully they’re also learning ways to support me and the symptoms I’m struggling with, identifying why these symptoms are occurring.”