Current Funded Pilot Projects

2020-2021

Carole White, PhD, RN
Carole White, PhD, RN
Kylie Meyer, PhD
Kylie Meyer, PhD

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

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.

Jori Fleisher, MD MSCE
Jori Fleisher, MD MSCE

2. Jori Fleisher, MD MSCE

Learning to PERSEVERE: Peer Mentor Support and Caregiver Education in Lewy Body Dementia

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.

Jordan P Lewis, PhD
Jordan P Lewis, PhD
Jocelyn Shealy McGee, Ph.D., M.S.G.
Jocelyn Shealy McGee, Ph.D., M.S.G.

3. Jordan P Lewis, PhD & Jocelyn Shealy McGee, Ph.D., M.S.G.

Dementia Caregiver Mastery with Reminiscence Therapy and Traditional Foods

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.

Fayron Epps, PhD, RN
Fayron Epps, PhD, RN
Carolyn K Clevenger, DNP, GNP-BC, AGPCNP-BC, FAANP, FGSA
Carolyn K Clevenger, DNP, GNP-BC, AGPCNP-BC, FAANP, FGSA

4. Dr. Fayron Epps and Dr. Carolyn Clevenger

Producing a Fully Asynchronous Online Tele-Savvy Program

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.

Madeleine E. Hackney, PhD
Madeleine E. Hackney, PhD

5. Madeleine E. Hackney, PhD

Mechanisms of Enhancing Mastery via Health Education for Caregivers for Individuals with Lewy Body Dementias (LBD)

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.

Lindsay Prizer, PhD, MSW, LCSW
Lindsay Prizer, PhD, MSW, LCSW

6. Lindsay Prizer, PhD, MSW, LCSW

Developing a Mastery Empowerment Program for MCI Dyads

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.

2019-2020

Darby Morhardt

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.

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