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

Overview

Lewy Body Dementia (LBD) is the second most common form of degenerative dementia, affecting at least 2.4 million US adults, and the overwhelming majority of persons living with LBD (PLBD) are cared for by family caregivers. LBD caregiver strain: 1) exceeds that of non-LBD dementia caregivers; 2) worsens caregiver physical and mental health; and 3) increases the risk of PLBD hospitalization and institutionalization. LBD progression is complicated by combined motor, cognitive, and neuropsychiatric decline, and is punctuated by falls, infections, dehydration, and neuropsychiatric symptoms leading to acute healthcare utilization. Although family caregivers are uniquely positioned to identify and manage these challenges, which may avert emergency department visits and reduce morbidity, many caregivers lack the knowledge, skills, confidence, resources, and support to do so. The study team aims to 1) quantify the impact of PERSEVERE on caregiver knowledge, attitudes, mastery, and strain; 2) identify the intervention and mentor factors determining implementation fidelity; and 3) test the effects of PERSEVERE on PLBD quality of life and healthcare utilization. This will be accomplished in an NIH Behavioral Model Stage II national, randomized, attention-controlled, 12-week trial of PERSEVERE in 502 LBD caregivers in partnership with the Lewy Body Dementia Association, Parkinson's Foundation, and LBD Caregiver Advisors. The study team will match intervention arm caregivers with a trained peer mentor who will coach them through a modular, theory-based curriculum on LBD knowledge and social support. Attention-control participants will receive weekly, curated links to educational materials. The study team will identify immediate and delayed intervention effects, including mediators of strain at 12 weeks, and caregiver strain and PLBD outcomes at nine months. Implementation fidelity and PLBD healthcare utilization will be tracked biweekly. Qualitative methods will explore the intervention- and mentor-specific factors predicting fidelity, mentee outcomes, and retention. Remote recruitment, mentoring, and community engagement strategies will maximize accessibility and inclusion of underrepresented caregiver groups. Results will illuminate the extent to which leveraging prior LBD caregivers as expert interventionists can improve current caregiver outcomes, and in turn, PLBD outcomes. These results will inform future adaptation and dissemination of this model for other conditions.

Lewy body dementia (LBD) affects at least 2.4 million people in the US and is associated with cognitive, motor, and neuropsychiatric symptoms yielding higher morbidity and mortality than Alzheimer's Disease. LBD family caregiver strain: 1) exceeds that of non-LBD dementia caregivers, 2) worsens caregiver physical and mental health, and 3) independently increases the risk of hospitalization and institutionalization for persons living with LBD (PLBD). While dementia caregiver intervention research has been considerable, there has been minimal LBD caregiver research, where challenges may be greatest. PLBD have frequent emergency department (ED) visits and hospitalizations, driven by falls, infections, dehydration, and neuropsychiatric symptoms. Although family caregivers are uniquely positioned to identify and manage these challenges, which may reduce ED visits and morbidity, many caregivers lack the knowledge, skills, confidence, resources, and support to do so. NIA recognizes the gap in enhancing the knowledge and skills of dementia caregivers and the critical need to understand optimal intervention structure, content, mechanisms, and delivery methods. Without intervention, high LBD caregiver strain is associated with poorer caregiver outcomes, PLBD morbidity, and institutionalization. In non-LBD dementia and cancer, disease-specific, practical, succinct psychosocial educational interventions, and particularly those with peer mentoring-experienced caregivers coaching those earlier in the disease-have improved caregiver and patient outcomes. The long-term goal of this work is to improve PLBD outcomes by leveraging and creating a pipeline of knowledgeable, supported family caregivers as interventionists. The overall objectives are to determine the effects of Peer Mentor Support and Caregiver Education (PERSEVERE) on LBD caregiver outcomes, define factors predicting fidelity, efficacy, and retention, and explore PLBD impact. In the PI's K23NS097615 and earlier work, the study team established the ability of a labor-intensive, interdisciplinary intervention with caregiver-focused educational materials to stabilize caregiver strain and PLBD quality of life (QoL) compared with the usual decline seen in one year. The study team then refined educational materials in a caregiver peer mentoring pilot study and documented high retention and fidelity (NIH Stage Ia).The study team has since demonstrated its ability to: 1) mitigate caregiver strain and PLBD QoL in novel interventions; 2) recruit over 200 diverse LBD caregivers in two months' time; 3) train and retain LBD caregivers as peer mentor interventionists in an NIA-funded Stage Ib study; and 4) pilot a theory-driven, peer mentor-led educational intervention yielding high retention, fidelity, satisfaction, and efficacy on key mediators of caregiver strain (knowledge, attitudes, skills, and mastery). Given prior recruitment success (achieving all of our target sample sizes in our past work), preliminary data, and longitudinal stakeholder engagement, the study team proposes an NIH Stage II (efficacy) randomized, attention-controlled trial of PERSEVERE in 502 LBD family caregivers. The study team will evaluate immediate interventional effects on mediators of caregiver strain at 12 weeks, and the delayed impact on strain, health outcomes, and PLBD six months later. The central hypothesis: Peer mentor-delivered LBD education and support will improve caregiver strain and its mediators, and PLBD health outcomes, compared with usual care. The diverse, collaborative team will use mixed methods and the RE-AIM framework to pursue the following specific aims: Aim 1: To quantify the impact of the PERSEVERE program-an LBD-specific, peer mentor-supported educational intervention-on caregiver knowledge, attitudes, mastery, and strain. 1. Test the difference in LBD knowledge, attitudes, and mastery after 12 weeks of PERSEVERE intervention vs. attention control condition (weekly emailed resources without peer support) among LBD family caregivers. 2. Compare change in caregiver strain among active mentees vs. control caregivers at nine months. Aim 2: To identify the intervention and peer mentor factors determining implementation fidelity. 1. Quantify the reach, adoption, implementation, and maintenance of PERSEVERE. 2. Identify matching and mentor characteristics associated with mentee outcomes and mentor retention. Exploratory Aim 3: To test the effects of PERSEVERE on PLBD quality of life and healthcare utilization. 1. Test the difference in caregiver-reported PLBD QoL from baseline to nine months between active vs. control caregivers. 2. Quantify the difference in combined ED and hospital visits for falls, infection, dehydration, and neuropsychiatric symptoms between baseline and nine months for active and control PLBD.