Peer Mentor Support and Caregiver Education

This randomized, controlled trial involves a 12-week behavioral intervention (PERSEVERE) for Lewy Body Dementia (LBD) family caregivers comprised of discussion of and coaching through specific LBD knowledge and social support topics during weekly phone calls with a trained caregiver peer mentor (interventionist), guided by a practical, health literacy-friendly handbook (PDF and website versions available).

The active group of mentees (intervention) will be compared with caregivers randomized in a 1:1 fashion to an education group (attention control) condition who will receive a weekly, emailed list of links to pre-existing educational content on LBD. The PERSEVERE intervention is delivered by caregiver peer mentors, a cadre of experienced current or former LBD family caregivers who will be recruited and trained as part of the study.

In order to participate you must meet the following criteria:

• Are at least 18 years of age.
• Are English-speaking.
• Are currently cohabitating with or spending >10 unpaid hours weekly on caregiving for a family member diagnosed with LBD, as measured by LBCRS, OR have met this criteria in the past if the family member with LBD has deceased.
• Are US-dwelling.
• Have access to and are comfortable with telephone use, including adequate hearing or appropriate assistive devices to communicate by phone.
• Have access to and are comfortable 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.
• Demonstrate capacity to consent to research participation.
• Have no known terminal diagnoses or life expectancy < 2 years, by self-report.
• If PLBD is alive, their cognitive symptoms or visual hallucinations have been present for 2 or more years.
• If PLBD is alive, PLBD is community-dwelling at the time of enrollment; subsequent placement in a facility does not exclude continued participation.

You will be excluded from the study if any of the following criteria apply to you:

• Are not at least 18 years of age.
• Are not English-speaking.
• Do not currently cohabitate with or spend >10 unpaid hours weekly on caregiving for a family member diagnosed with LBD, as measured by LBCRS, OR haven't met this criteria in the past if the family member with LBD has deceased.
• Are not US-dwelling.
• Don't have access to and are not comfortable with telephone use, including adequate hearing or appropriate assistive devices to communicate by phone.
• Do not have access to and are not comfortable 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.
• Cannot demonstrate capacity to consent to research participation.
• Have any known terminal diagnoses or life expectancy < 2 years, by self-report.
• If PLBD is alive, their cognitive symptoms or visual hallucinations have been present for <2 years.
• If PLBD is alive, PLBD is not community-dwelling at the time of enrollment; placed in a facility at the time of screening.

This is a partial list of eligibility requirements. To inquire about your eligibility, please call the contact number provided. If you wish to inquire via email, please include the title of the study in your message.