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

Launched by RUSH UNIVERSITY MEDICAL CENTER · Apr 24, 2024

Keywords

ClinConnect Summary

The PERSEVERE trial is studying how peer mentor support and caregiver education can help those caring for individuals with Lewy Body Dementia (LBD), a common form of dementia that can cause both cognitive and physical challenges. The trial aims to improve the knowledge, confidence, and well-being of caregivers, who often experience high levels of stress and strain. By matching caregivers with trained peer mentors, the study hopes to provide valuable support and education over 12 weeks. Participants will either receive this peer mentoring or access to curated educational materials, and researchers will assess the impact on both caregivers and the individuals they care for, including their quality of life and healthcare needs.

To be eligible for the trial, caregivers must be at least 18 years old, speak English, and live in the U.S. They should be spending at least 10 hours a week caring for someone with LBD. Caregivers will need access to a phone and the internet for communication and training. Throughout the study, participants can expect regular check-ins and support, while also contributing to important research that could improve care for future caregivers and their loved ones.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • 1. Peer Mentors
• • 1. Participants must be 18 years of age or older.
• • 2. participant must be English-speaking.
• • 3. Participant must be US-dwelling.
• 4. Participants must be either:
• • 1. Individuals currently cohabitating with or spending at least 10 hours weekly on caregiving for a family member diagnosed with LBD, as measured by LBCRS score ≥ 3, OR
• • 2. met this criterion in the past if the family member with LBD is deceased.
• • 5. Each participant must have access to and comfort with telephone use, including adequate hearing or appropriate assistive devices to communicate by phone.
• • 6. Each participant must have access to and comfort with internet use, including a working email address and adequate vision or appropriate assistive devices to be able to open and read email communications and participate in an online mentor training session.
• • 7. Each participant must demonstrate the capacity to consent to research participation.
• • 8. Each participant must not have any known terminal diagnoses or life expectancy less than 2 years, by self-report.
• • 9. If PLBD is alive, their cognitive or visual hallucinations have been present for 3 or more years, or between 2-3 years and caregiver actively opts for the mentor role after review of roles and responsibilities with a study team member.
• 2. Caregivers:
• • 1. Participants must be 18 years of age or older.
• • 2. participant must be English-speaking.
• • 3. Participant must be US-dwelling.
• 4. Participants must be either:
• • 1. Individuals currently cohabitating with or spending at least 10 hours weekly on caregiving for a family member diagnosed with LBD, as measured by LBCRS score ≥ 3, OR
• • 2. met this criterion in the past if the family member with LBD is deceased.
• • 5. Caregiver must have access to and comfort with telephone use, including adequate hearing or appropriate assistive devices to communicate by phone
• • 6. Caregiver must have access to and comfort with internet use, including a working email address and adequate vision or appropriate assistive devices to be able to open and read email communications and participate in an online mentor training session.
• • 7. Caregiver must demonstrate capacity to consent to research participation.
• • 8. Caregiver must not have any known terminal diagnoses or life expectancy less than 2 years, by self-report
• • 9. PLBD cognitive symptom or visual hallucination onset within the past two years, OR symptoms for 2-3 years and after one-on-one explanation of mentor role and responsibilities with study team member, does not feel confident in ability to serve as a mentor, opts for the role of caregiver participant and being randomized to PERSEVERE or attention control.
• Exclusion Criteria:
• • 1. Peer mentors
• • 1. Individual is less than 18 years of age.
• • 2. Individual is not English-speaking.
• • 3. Individual is not US-dwelling.
• • 4. Individual who does/did not cohabitate with or spend at least 10 hours weekly on caregiving.
• • 5. Individual was paid for more than 50% of their caregiving responsibilities.
• • 6. Individual does not have access to or comfort with telephone use or lacks adequate hearing or appropriate assistive devices to communicate by phone.
• • 7. Individual does not have access to or comfort with internet use, including a working email address or adequate vision or appropriate assistive devices to be able to open and read email communications and participate in an online mentor training session.
• • 8. Individual lacks capacity to consent to research participation.
• • 9. PHQ-9 greater than 14, indicating severe depression.
• • 10. PHQ-9 question 9 (suicidal ideation) greater than 1.
• • 11. BGQ greater than 5, indicating complicated grief.
• • 12. Individual endorses a known terminal diagnosis or life expectancy less than 2 years, by self-report.
• • 13. PLBD cognitive symptom or visual hallucination onset less than 2 years (meeting this criterion qualifies individual as caregiver participant instead)
• • 14. PLBD cognitive symptom or visual hallucination onset 2-3 years ago but after one-on-one explanation of mentor role and responsibilities with study team member, does not feel confident in ability to serve as a mentor; may opt for the role of caregiver participant and being randomized to PERSEVERE or attention control.
• 2. Caregivers:
• • 1. Caregiver is less than 18 years of age.
• • 2. Caregiver is not English-speaking.
• • 3. Caregiver is not US-dwelling.
• • 4. Caregiver's PLBD scores 0-2 on LBCRS
• • 5. Caregiver does not cohabitate with or spend at least 10 hours weekly on caregiving.
• • 6. Caregiver is paid for more than 50% of their caregiving responsibilities.
• • 7. PLBD is living in a nursing facility at the time of screening.
• • 8. Caregiver does not have access to or comfort with telephone use, or lacks adequate hearing or appropriate assistive devices to communicate by phone.
• • 9. Caregiver does not have access to or comfort with internet use, including a working email address or adequate vision or appropriate assistive devices to be able to open and read email communications. and participate in an online mentor training session.
• • 10. PHQ-9 greater than 14, indicating severe depression.
• • 11. PHQ-9 question 9 (suicidal ideation) greater than 1.
• • 12. Caregiver lacks capacity to consent to research participation.
• • 13. Caregiver endorses a known terminal diagnosis or life expectancy less than 2 years, by self-report.
• • 14. PLBD cognitive symptoms or visual hallucinations have been present. for less than 3 years, or between 2-3 years and caregiver actively opts for the mentor role.