By Erica Techo
Alzheimer’s Disease and other related dementias impact millions of people in the United States —one in nine individuals age 65 and older experience dementia symptoms. According to the Alzheimer’s Association, family and friends provide an estimated 15.3 billion hours of care for individuals with Alzheimer’s or other dementias through emotional support, assistance with daily and other activities. As the country’s over 65 population continues to grow, the number of individuals living with memory disorders is projected to climb, as is the demand placed on caregivers.
In order to create the best possible health outcomes and care interventions for individuals with dementia and their caregivers, University of Alabama at Birmingham School of Nursing Associate Professor Carolyn Pickering, PhD, RN—who is the first faculty member in School history to have four active R01 grants at the same time—is continuing to grow her program of research on caregiving and dementia through four R01 grants, totaling more than $11 million, from the National Institutes of Health.
“The act of caregiving is complex, as caregivers serve as advocates for their loved ones while also managing increasingly complicated medical and nursing tasks. The responsibilities caregivers face can create feelings of stress and burden, which can overshadow the positive parts of caregiving such as getting to enjoy time with their loved one,” Pickering said. “Through this research, we can enhance care and better fit the needs of caregivers.”
Through her research, Pickering is analyzing the complexities of caregiving and how it impacts both caregivers and individuals with dementia.
With her newest $3.08 million, five-year R01, Pickering will evaluate missed care in family caregiving. Missed care is categorized as care that is left undone due to other factors such as time constraints, scare resources, etc., and this grant will lead to improved understanding of what factors and situations may lead to missed care.
By analyzing data from daily diary surveys and in-depth interviews, this study will create a data-driven model that explains how family caregivers make care-related decisions in the context of daily life. Moving forward, this model can help create interventions that better fit the practical needs of caregivers and work to enhance care in real-life situations.
Another $3.28 million, five-year R01 is allowing Pickering to look at medication administration in the context of family caregiving.
Many patients with dementia are prescribed medications that can be administered “as needed,” but we don’t know how or when, in real life situations, caregivers chose to use these medications to manage symptoms their loved one is experiencing.
By studying this phenomenon, Pickering will add to knowledge to inform safe prescribing and caregiver education related to administration of medication for treatment of behavioral symptoms to improve the lives and wellbeing of dementia patients and their caregivers.
“As part of my training and licensure as a professional registered nurse, I was taught how to assess for and determine if an ‘as needed’ medication was appropriate. This is a very common task in nursing. Caregivers are expected to do this, but do not have the benefit of nursing training,” Pickering said. “This means caregivers could be over or under-utilizing medications or administering them in situations where they would not create any benefit. It is important to learn how caregivers use medications to manage symptoms because all medications have risks which can cause safety concerns and if used inappropriately or incorrectly it can actually make dementia symptoms worse.”
Pickering’s research also includes a $2.88 million five-year grant regarding biological and environmental factors driving behavioral symptoms in Alzheimer’s disease. Initially funded in August 2020, Pickering is working with her husband, UAB School of Medicine Assistant Professor of Neurology Andrew Pickering, PhD, to study how environmental, personal and disease related factors contribute to the presentation of behavioral symptoms in patients with Alzheimer’s disease.
The study utilizes daily, virtual diary surveys filled out by caregivers. The diaries track symptoms, activities and other environmental factors. In addition to the survey data from diaries, the study includes biological samples to seek out other explanations for behavioral symptoms, including genetic predispositions or microbiota.
“Findings from this study can 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,” Pickering said. “We want to give caregivers as many tools as we can to help their loved ones.”
The fourth R01, a $1.78 million four-year grant, awarded in 2018, is looking at risk and protective factors for high quality care and potentially unsafe caregiving behaviors.
By studying the routines, experiences, and actions of caregivers through daily diary surveys, this research will identify modifiable intervention targets that can promote the safety and wellbeing of both the caregiver and care recipient.
This project also includes a NIH diversity supplement, through which UAB School of Nursing Assistant Professor Frank Puga, PhD, is investigating daily factors that impact mental health symptoms. This additional work can lay foundations for supporting caregiver mental health and wellbeing.
“A central theme to this program of research is understanding caregiver decision-making in the context of their real-life day-to-day experiences. We examine how daily stressors like a caregiver having a disruption to the normal daily routine, and daily positive experiences like a caregiver getting to have a social outing with friends, influence how caregivers make decisions and provide care,” Pickering said. “We also investigate how personal differences among caregivers such as depression or financial constraints influence how caregivers respond to daily care situations.
“Since the majority of care a person living with dementia will receive in their lifetime is provided by their family caregiver, it is essential to understand their daily experiences to identify ways to best support their caregiving activities in consideration of their normal daily life,” Pickering continued. “In our work to date, behavioral symptoms of dementia consistently have the strongest influence on a caregivers’ daily behaviors and activities, which is why we designed the project on biological and environmental factors driving symptoms.”
Pickering credits her success in building a large research program to the mentorship and professional development opportunities she was afforded as a student that were intended to promote entry into a biomedical scientific career. While an undergraduate at the University of Delaware School of Nursing, she received professional development and research funding under the INBRE Program of the National Center for Research Resources at the NIH and the Jeanne K. Buxbaum scholarship. As a graduate student at the University of California at Los Angeles School of Nursing, she participated in additional coursework and professional development training as part of a HRSA-funded grant to increase the capacity of geriatric nurse scientists.
Pickering said she is looking forward to using her research success to provide similar opportunities to promote entry into biomedical scientific careers for women and other underrepresented groups in science at UAB.
