Learning to PERSEVERE: Peer Mentor Support and Caregiver Education in Lewy Body Dementia
Lewy Body Disease, Parkinson Disease Dementia, Dementia With Lewy Bodies
About this trial
This is an interventional supportive care trial for Lewy Body Disease focused on measuring caregiver strain, caregiving mastery, peer mentor, caregiver education, Lewy Body Disease, Parkinson's Disease, social support
Eligibility Criteria
Inclusion Criteria:
Focus group participants
- Each subject must be 21 years of age or older. A subject may identify as any sex, any race, and any ethnicity.
- Subjects must be either:
i. Individuals who served as peer mentors in our previous study of caregiver peer mentoring and completed at least 16 weeks of mentoring. ii. Individuals who were caregiver mentees in our previous study of caregiver peer mentoring who completed 16 weeks of mentoring. iii. Current informal family caregivers of community-dwelling LBD patients in the Chicago area, recruited from Rush University System for Health and Advocate Aurora Health, who have not participated in mentoring. c. Each subject must be primarily English-speaking. d. Each subject must be willing and able to attend a virtual, online focus group via an internet- and video-camera-equipped computer, tablet, or smartphone.
Peer mentors
- Each subject must be 21 years of age or older. A subject may identify as any sex, any race, and any ethnicity.
- Each subject must be a non-professional caregiver (defined as cohabitating with or spending >10 hours weekly on unpaid caregiving duties) of LBD patients. Mentors may participate regardless of their loved one's status (living at home, institutionalized, or deceased).
i. If mentors also receive compensation for a portion of their time spent on caregiving duties through state or community programs, they may participate as long as they cohabitate or spend >10 hours providing unpaid care to their loved one. c. Each subject must have >2 years of LBD caregiving experience d. Each subject must be primarily English-speaking. e. Each subject must have a working email address and internet access. f. Each subject must have a working telephone number at which he or she can be reached and which he or she is willing to share with the matched mentee.
g. Each subject who will attend an online peer mentor training session must have an internet- and video-camera-equipped computer, tablet, or smartphone
Caregiver mentees
- Each subject must be 21 years of age or older. A subject may identify as any sex, any race, and any ethnicity.
- Each subject must be a non-professional, unpaid caregiver, as defined above, of a community-dwelling LBD patient.
- Each subject must be interested in improving their caregiving mastery.
- Each subject must be primarily English-speaking.
- Each subject must have a working email address and internet access.
- Each subject must have a working telephone number at which he or she can be reached and which he or she is willing to share with the matched mentor.
Exclusion Criteria:
- Subjects exhibiting symptoms of a severe psychiatric disorder interfering with their ability to participate in the study, as determined by a study team member or the PI.
- Subjects who are primarily non-English-speaking.
- Terminal illness (life expectancy of < 12 months).
Sites / Locations
- Rush University Medical Center
Arms of the Study
Arm 1
Arm 2
Arm 3
Other
Other
Experimental
Focus group participants
Peer mentors
Caregiver mentees
Subjects participating in focus groups will be either: caregiver mentees in our previous peer mentoring study peer mentors and completed 16 weeks of mentoring in our previous peer mentoring study current family caregivers of community-dwelling LBD patients in the Chicago area. The investigators will conduct virtual focus groups using a password-protected videoconference platform. The informed consent process will take place online prior to the focus group. Focus groups will be led by a qualified neuropsychologist using open-ended questions. The aim of these groups is to revise and improve upon our previous peer mentor program's curriculum. Participants will be presented with the previous program's curriculum and a variety of proposed educational resources for inclusion in the revised curriculum. The investigators will obtain participants' feedback. Focus groups will be recorded and transcribed.
Mentors will attend one 6-7 hour virtual training session. Study expectations and logistics will be reviewed with each potential mentor prior to the training session via phone. Informed consent process will take place online via REDCap prior to the training session. Baseline data will be collected via online surveys. Next, mentors will receive training regarding topics including active listening, mentoring, goal-and boundary-setting, an overview of LBD, risk factors for hospitalization, impact on caregiver, practical approaches to symptom management, and caregiving issues. The study team will present the PERSEVERE curriculum and accompanying handbook. The team will solicit questions and lead roleplay conversations. Finally mentors will complete post-training assessments. Once all caregiver mentees (Arm 3) are recruited, the mentors will contact their mentees once weekly by phone for 16 weeks to deliver the PERSEVERE curriculum.
Once Aim 2 is complete and mentors have been trained, caregiver mentees will be matched with mentors by relationship to LBD patient, then by sex and age, as much as possible. The study team will contact mentees once a match is available for them. The mentee will complete baseline primary and secondary outcome assessments online via REDCap, including: mastery and loneliness scales, Short Zarit Burden Interview, Hospital Anxiety and Depression Scale. The team will provide the mentor's contact information and send the PERSEVERE handbook. Mentoring pairs will begin the 16-week peer mentor program. Pairs will be expected to speak for >15-30 minutes weekly, and to review that week's PERSEVERE topics in the handbook before or during each call to facilitate meaningful conversations. Mentors and mentees will complete online study diaries every 2 weeks. Upon completion of the 16-week mentor program, mentors and mentees will be sent a link to complete postmentoring assessments online.