By Erica Techo
A five-year, $2.87 million R01 grant from the National Institute of Mental Health to the University of Alabama at Birmingham School of Nursing Associate Professor Carolyn Pickering, PhD, MSN, and her research collaborator and husband Assistant Professor of Neurology Andrew Pickering, PhD, will study how environmental, personal and disease related factors contribute to the presentation of behavioral symptoms in patients with Alzheimer’s disease.
Dementia patients can experience a wide variety of symptoms, and while memory loss is one of the most common, little is known about what causes the varying presentation in behavioral symptoms associated with Alzheimer’s disease and dementia.
“People with dementia experience other symptoms such as aggression, apathy, anxiety, and others, but which symptoms they have and how intensely they’ll experience those symptoms varies quite significantly among patients,” said Carolyn Pickering, whose program of research focuses on supporting high-quality care within family caregiving situations. “The variability of symptoms makes it really hard to plan, to leave the house or to complete basic tasks, and caregivers often say they want to know what causes the ‘bad days.’ Through this study, we’ll look at underlying causes to determine what factors into that variability.”
The study will include 162 patient-caregiver partners, with equal representation of Caucasian and African American participants to make sure interventions and findings will work across populations. The caregivers will complete daily, virtual diary entries that track symptoms, activities and other environmental factors. Carolyn Pickering has utilized these survey-like diaries in past studies and said that feedback is typically positive, and that caregivers say the diaries offer a chance to reflect on their day.
“Generally, we’ve gotten really good feedback from diary studies, and we typically get 90 percent of diaries back,” she said. “For caregivers, symptoms are their life, so this is a really important topic. The diaries also help with measurement accuracy because you get more real-time information and less recall bias.”
By collecting diary entries, they can build an idea around what behaviors are a symptom of dementia versus which are a response to environmental factors, Carolyn Pickering said.
In addition to the survey data from diaries, the study will also involve collection of biological samples to analyze on a molecular level and seek out other explanations such as genetic predispositions. Once again, this information will allow them to determine which symptoms are environmental responses rather than symptoms of the disease process which can inform treatment plans such as whether to use a pharmacologic or non-pharmacologic approach.
Previous clinical trials have developed treatments in model organisms such as mice, but those treatments are not effective in human subjects, said Andrew Pickering. Understanding what factors may cause milder or more severe symptoms is a first step toward addressing or lessening disease symptoms directly.
“If we can understand why patients are experiencing dementia and symptoms differently, we can work to lessen disease symptoms, which may be more effective than the approaches we have,” Andrew Pickering said.
Carolyn Pickering added that while some pharmacologic treatments work to address aggression or anxiety, there is no FDA-approved drug explicitly focused on the management of dementia symptoms. Non-pharmacologic strategies to managing symptoms if the first-line approach, but unfortunately they don’t always work.
“Findings from this study will inform a nursing, person-centered approach in which we can individualize care strategies based on the type or severity of a symptom a patient presents with. By taking an interdisciplinary approach with our biologic components the findings will also inform novel drug development for symptom management,” Carolyn Pickering said. “We want to give caregivers as many tools as we can to help their loved ones.”
The Pickerings joined UAB in 2019 and said its resources, as well as location and community reach, make it possible to reach a diverse population as well as a population that is heavily impacted by dementia, which hopefully will lead to better person-centered and pharmacological treatments for Alzheimer’s and dementia. They are also both investigators involved with the UAB Alzheimer's Disease Center's research.
“One of the benefits is that UAB is a leading hospital that draws in patients from the four surrounding states,” said Andrew Pickering. “The South also has very high levels of dementia, which is partly to do with other health factors. At UAB, we’re able to encompass a larger pool of participants from a range of health conditions, socioeconomic status and geographic location, that we might not be able to reach at other academic health centers to hopefully develop better interventions and treatments in the future.”