1. Dr. Carole White and Dr. Kylie Meyer
A pilot evaluation of Learning Skills Together: An intervention to teach complex care skills to caregivers of persons living with Alzheimer’s Disease
Professor and Nancy Smith Hurd Chair in Geriatric Nursing and Aging Studies, UT Health San Antonio, School of Nursing, Caring for the Caregiver Program
Carole White, PhD, RN is Professor and Nancy Smith Hurd Chair in Geriatric Nursing and Aging Studies at the School of Nursing, UT Health San Antonio. She leads the Caring for the Caregiver, a program supporting family caregivers to persons living with dementia through education, research, and community engagement. She is nationally recognized for her research with family caregivers, with her research focused on optimizing outcomes for family caregivers of stroke survivors and persons living with dementia, through development of interventions and translation of evidence-based interventions into practice. She is a Fellow of the American Academy of Nursing. Dr. White teaches in the doctoral nursing programs at the School of Nursing.
Postdoctoral Research at the School of Nursing’s Caring for the Caregiver Program at UT Health San Antonio
Kylie Meyer, PhD, is a postdoctoral researcher at the UT Health San Antonio School of Nursing Caring for the Caregiver Program. She received doctoral training at the University of Southern California Leonard Davis School of Gerontology, where she examined online programs to better support the informational needs of family caregivers. Prior to her doctoral training, Dr. Meyer completed master’s-level Gerontological training on a U.S. Fulbright at the University of Southampton. As current TST TL1 postdoctoral trainee, her research focuses on building the evidence-based for translatable intervention programs to support caregivers’ health and quality of care within families.
The purpose of this study is to pilot test the Learning Skills Together intervention intended to enhance caregivers’ self-efficacy when providing complex care tasks, such as transferring and managing incontinence. The Learning Skills Together program has been developed by an interdisciplinary team of healthcare experts, and will be delivered online to caregivers over 2 weeks. The study uses a pre- and post-test design to examine differences in self-efficacy and mastery among caregivers to persons living with mid-stage dementia.
2. Jori Fleisher, MD MSCE
Learning to PERSEVERE: Peer Mentor Support and Caregiver Education in Lewy Body Dementia
Leslie Nan Burridge Endowed Faculty Scholar in Parkinson’s Disease Research, Movement Disorders Neurologist
Jori Fleisher, MD MSCE is the Leslie Nan Burridge Endowed Faculty Scholar in Parkinson’s Disease Research and an Associate Professor of Neurological Sciences at Rush University Medical Center. She is a movement disorders neurologist who directs the Rush Lewy Body Dementia Association Research Center of Excellence, CurePSP Center of Care, and the Rush Advanced Interdisciplinary Movement Disorders Supportive Care (AIMS) Clinic. Dr. Fleisher received her Master’s of Science in Clinical Epidemiology from the University of Pennsylvania, where she completed neurology and global health equities residencies and movement disorders fellowship. Dr. Fleisher has additional training in health services research, palliative care, and implementation science. Supported by the National Institutes of Health, foundations, and philanthropy, Dr. Fleisher has several studies underway focused on interdisciplinary home visits, telemedicine, interprofessional education, and peer mentoring to improve the lives of patients and families living with advanced movement disorders. Dr. Fleisher is a graduate of the American Academy of Neurology Emerging Leaders Forum, a graduate and faculty member in the Palatucci Advocacy and Leadership Forum, and a frequent speaker for local and national patient educational events.
AIM 1
To operationalize caregiving mastery in Lewy Body Dementia (LBD), focused on fall prevention, infection and neuropsychiatric symptom management, and advance directives.
AIM 2
To test the impact of peer mentor training on LBD caregiver mastery. We will adapt, improve, and implement a peer mentor support and caregiver education (PERSEVERE) intervention for LBD caregivers. We will recruit and train a cohort of approximately 30 LBD peer mentors, developing their capacity to serve as LBD caregiving mastery coaches.
AIM 3
To assess the impact of peer mentoring on Lewy Body Dementia caregiver mentees. We will match each new mentor with an active LBD caregiver for 16 weeks of peer mentoring using our revised conversation guides and handbook to assess the impact of mentoring on caregiver mastery, strain, anxiety, and depression.
3. Jordan P Lewis, PhD & Jocelyn Shealy McGee, Ph.D., M.S.G.
Dementia Caregiver Mastery with Reminiscence Therapy and Traditional Foods
Professor, Memory Keepers Medical Discovery Team,
University of Minnesota Medical School, Duluth campus
Dr. Jordan P. Lewis, Unangax, from the Native Village of Naknek, is a Professor with the Memory Keepers Medical Discovery Team and the University of Minnesota Medical School, Duluth campus. He is a cross-cultural community psychologist (PhD), social worker (BSW, MSW), a credential professional gerontologist (CPG), and a Fellow of the Gerontological Society of America. His research has identified indigenous cultural generativity as an important tool for Indigenous Elders’ health and wellbeing, as well as a key component of my Alaska Native Model of Successful Aging. Dr. Lewis’s work has important implications for the wellbeing of Alaska Native and American Indian older adults, including those with Alzheimer’s Disease and related dementias, their caregivers, and family and community members. His work has the potential to guide significant future research in the area of Indigenous health and dementia, with generalizability to aging theory among all marginalized groups.
Assistant Professor
Garland School of Social Work
Baylor University
Dr. Jocelyn Shealy McGee is an assistant professor at the Baylor University Garland School of Social Work. She received her Ph.D. in Clinical Psychology from Fuller. Postdoctoral fellowship training was undertaken in Clinical Neuropsychology at Baylor College of Medicine (APPCN accredited). A second postdoctoral fellowship was completed in Older Adult Research at the Aging Treatment Studies Program at Stanford University School of Medicine and the VA Palo Alto Healthcare System.
Dr. McGee is a Fellow of the Gerontological Society of America (GSA) in the Behavioral and Social Sciences Section and the past Co-Chair of the GSA Alzheimer’s Disease Research Interest Group. Her international interdisciplinary research team aims to develop culturally sensitive psychosocial clinical interventions for caregivers of persons with Alzheimer’s disease and other complex chronic health conditions through the integration of community-based participatory and indigenous research methodologies. Dr. McGee has contributed to the development, implementation, and evaluation of several interventions over the course of her career such as the Resources for Enhancing Caregiver Health (REACH) II intervention, the STAR VA program (which has been implemented across the VA system), and the En-Rich intervention (Enhancing Rural Interventions for Caregiver Health) which is a cognitive-behaviorally oriented telepsychology intervention.
In addition to the recently awarded Emory Roybal Center study titled, “Dementia Caregiver Mastery Using Cultural Practices” (Lewis, PI), Dr. McGee has a study aimed at better understanding the role of spirituality, positive psychology, health, & well-being in people with early-stage dementia and their family members with close to 200 participants. Additionally, she was nominated and selected for the “Spirit of Hope” Award by Sister Rosemary Nyirumbe (Time’s 100 Most Influential People for 2014) and Pros for Africa for her efforts in Malawi, Africa supporting grandmothers and other Elders who are serving as the primary caregivers of children whose parents have died from HIV/AIDS and other preventable/treatable diseases. In the summer of 2020, she served as a consultant for a Haitian NGO to develop a telepsychology program to address to needs of the Haitian people in the context of the COVID-19 pandemic.
This project will develop a testable American Indian and Alaska Native (Indigenous) family caregiver education program to promote caregiver mastery in the management of persons with dementia’s agitation and behavioral and psychological symptoms of dementia that integrates cultural practices and values. The outcome of this project will be a fully developed, Indigenous caregiver mastery development program to be ready for Stage 1 test.
4. Dr. Fayron Epps and Dr. Carolyn Clevenger
Producing a Fully Asynchronous Online Tele-Savvy Program
Assistant Professor
Nell Hodgson Woodruff School of Nursing
Emory University
Dr. Fayron Epps is an Assistant Professor at the Nell Hodgson Woodruff School of Nursing, Emory University. She has 20 years of nursing experience. She completed her postdoctoral fellowship with the National Hartford Center of Gerontological Nursing Excellence. She is a former Tideswell Emerging Leaders in Aging Scholar. Dr. Epps is an active member with numerous professional organizations, including the Gerontological Society of America and the Southern Gerontological Society. She currently serves on the Board of Directors for the Southern Gerontological Society, Alzheimer’s Association Georgia Chapter, and Meals on Wheels Atlanta. Her career goal as a nurse scholar is to promote health across the life span and increase the quality of life for family caregivers and persons living with dementia through nursing research, education and service.
Associate Dean for Clinical and Community Partnerships
Dr. Clevenger, gerontological nurse practitioner, is the Associate Dean for Clinical and Community Partnerships at the Nell Hodgson Woodruff School of Nursing. She is a nationally recognized educational leader in advanced practice nursing and in geriatrics and gerontology. She is a Past President of the Gerontological Advanced Practice Nurses Association, Fellow of the American Association of Nurse Practitioners (AANP) and the Gerontological Society of America, and contributor to the AANP Certification Program. She is Clinical Director of the nurse-led patient centered medical home for people living with dementia, the Integrated Memory Care Clinic (IMCC). IMCC represents an innovative clinical model that provides memory and primary care in a single integrated model for people living with dementia and their care partners.
AIM 1
Develop a fully asynchronous online Savvy program that incorporates learning activities that promote both knowledge and skill acquisition and develop/enhance caregivers’ felt-sense of caregiving mastery. With input from clinicians, educators, Tele-Savvy facilitators, and caregiver advisors, and assisted by the Roybal Center’s Design Studio, we will iteratively develop a storyboard and scripted curriculum for this online educational program. Then, in collaboration with our educational design consultant, we will modify/produce the text and video assets and place them on a continuing education platform that promotes active learning.
AIM 2
Establish the feasibility, acceptability and preliminary efficacy of the online program. We will recruit 60 family caregivers to take part in a no-control trial of the program, gathering data – at baseline, immediately upon course completion and at 3 months post-baseline – on caregiver distress measures (depression, strain, burden, anxiety), caregiver competence/ mastery, and care recipient quality of life. We will administer investigator-developed evaluation surveys to assess feasibility and acceptability and ad lib improvement comments. We will also seek formative evaluation input through at least 15 semi-structured debriefing interviews, post completion.
5. Madeleine E. Hackney, PhD
Mechanisms of Enhancing Mastery via Health Education for Caregivers for Individuals with Lewy Body Dementias (LBD)
Associate Professor of Medicine
Department of Medicine, Division of General Medicine and Geriatrics
Emory University School of Medicine
Research Health Scientist
Center for Visual and Neurocognitive Rehabilitation
Atlanta VA Health Care System
Investigator, Birmingham/Atlanta VA GRECC
Dr. Madeleine E. Hackney is a Research Scientist with the Center for Visual and Neurocognitive Rehabilitation at the Atlanta VA and Associate Professor in the Emory School of Medicine, Department of Medicine, Division of General Medicine and Geriatrics with adjunct appointments in the School of Nursing and Department of Rehabilitation Medicine. She graduated from New York University, Tisch School of the Arts with a Bachelor of Fine Arts in Dance and completed pre-medical curriculum at Hunter College, City University of New York. She received her PhD in Movement Science at Washington University in St. Louis and then completed post-doctoral work at Emory University and the Atlanta VA in geriatric sensorimotor rehabilitation. Dr. Hackney has served on VA Review Panel since 2013 and for the National Institutes of Health since 2017. She has received funding from the National Science Foundation, the National Institutes of Health, the Department of Veterans Affairs, the Patient Centered Outcomes Research Institute (PCORI) and several PD foundations. Dr. Hackney’s work has been featured in the New York Times, Scientific American, in Oliver Sach’s Musicophilia and the Atlanta Journal Constitution. She has presented her work nationally and internationally as an invited speaker, including at the Karolinska institute in Sweden, Hong Kong, Kyoto and in Tel Aviv, Israel. Dr. Hackney was the 2015 recipient of the Selma Jeanne Cohen Dance Lectureship award provided by the Fulbright foundation and was a finalist for the 2016 Atlanta Magazine’s Groundbreaker of the Year.
Lewy Body Dementias (LBD), an umbrella term for the conditions, dementia with Lewy bodies (DLB) and Parkinson’s disease dementias (PDD), is the second most common dementia in the U.S. Major autonomic LBD symptoms may have greater impact on daily life than those of AD. Caregiver interventions to improve caregiving mastery for patients with LBD are greatly needed. The main activity of this pilot trial (Aim 1) will allow investigators to design an educational program for LBD caregivers. A second activity (Aim 2), separately supported by Emory’s Lewy Body Dementia Association (LBDA) Research Center of Excellence (RCOE) will allow us to determine effect sizes to power a future clinical trial. Aim 1: Using focus group identification of attitudes and beliefs concerning educational content and approaches to improving caregiving mastery and the barriers and facilitators to delivering an educational intervention, design a prototype LBD educational program delivered remotely. Aim 2: Test the feasibility and acceptability of the educational intervention designed in Aim 1 and use effect size results to establish power estimates for a future trial.
6. Lindsay Prizer, PhD, MSW, LCSW
Developing a Mastery Empowerment Program for MCI Dyads
Primary Care Core Lead for Georgia Memory Net;
Faculty for the Cognitive Empowerment Program
Emory University School of Medicine
Lindsay Prizer, PhD, MSW, LCSW is an Assistant Professor in the Emory University School of Medicine’s Division of General Medicine and Geriatrics. She is a licensed clinical social worker, and she holds a PhD in public health. Dr. Prizer serves as the Primary Care Core Lead for Georgia Memory Net, a state-funded project redesigning the Georgia healthcare system to improve early screening and diagnosis of dementia throughout the state. She is also the Care Partner Programming Lead of the Cognitive Empowerment Program, an evidence-based lifestyle program for persons with mild cognitive impairment and their care partners. Dr. Prizer was one of 27 lead authors internationally for the 2018 Alzheimer’s Association Dementia Care Practice Recommendations. She currently serves as a Board Member for the Georgia POLST Collaborative and as Faculty for the Alzheimer’s Association’s LINC-AD Research Consortium.
AIM 1
Organize a socioeconomically diverse Advisory Committee of persons with mild cognitive impairment (MCI) and their carepartners. Then using a collaborative planning approach, intervention mapping, and caregiver mastery principles outlined in The Savvy Caregiver program, we will guide the Advisory Committee in the development of a comprehensive, novel psychoeducation program for an MCI patient and carepartner population. The intervention will focus on improving caregiving mastery, mood, quality of life, among other outcomes.
AIM 2
Evaluate the developed intervention through pilot testing in small groups of 4-6 dyads (n=60) with quantitative outcomes measured at pre-test, posttest, and 3 months follow-up after the program. Following the completion of the intervention, feasibility and acceptability will be assessed through in-depth interviews with a sub-sample of (n=30) intervention participants.
1. Dr. Darby Morhardt
Outreach, Recruitment, and Education core director of the Northwestern Alzheimer’s Disease Center (ADC)
AIM 1
In collaboration with PPA caregiver advisors and clinical experts at the Northwestern Mesulum Center, develop and refine a prototype distance-delivered psychoeducation program (modeled on the Tele-Savvy Program) for caregivers of persons living with language variant FTD (primary progressive aphasia-PPA).
AIM 2
Assess the acceptability and usability of the refined prototype and its preliminary efficacy in improving caregiver mastery and mood and care recipient quality of life in PPA families.
2. Dr. Whitney Wharton
Cognitive Neuroscientist
AIM 1
Create a LGB-focused caregiver intervention program, to assess the stressors and unique needs of LGB caregivers of persons living with neurocognitive illnesses. Based on existing research, we hypothesize that, while the program will incorporate day-to-day and mood and behavior guidance components of Savvy, the LGB caregiver program will include learning objectives and teaching strategies focused on themes of physical, interpersonal, financial, social, and environmental stressors specific to LGB caregivers.
AIM 2
Assess, in a pilot test of the program with 30 LGB caregivers, the acceptability of the program and its preliminary efficacy in improving caregiver stress, mood and mastery and care recipient quality of life. This pilot will involve the collection of clinical indices (medical and medication history, height, weight, and blood pressure), and blood (plasma) from all 30 LGB caregivers, pre and post interventions to measure markers of inflammation influenced by stress in LGB caregivers, and stored for future innovative analyses.