N/A N=87 Supportive Care

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

Lewy Body Disease · Parkinson Disease Dementia · Dementia With Lewy Bodies

Bottom Line

View on ClinicalTrials.gov: NCT04649164 ↗

Enrolled (actual)

Serious AEs

0.0%

Results posted

Jan 2023

Primary outcome: Primary: Mastery Scale — 21.65; 18.91; 22.13; 19.2 units on a scale — p=0.36

Study Design & Population

Study type: Interventional
Phase: N/A
Interventions: Peer mentor support and caregiver intervention (Behavioral); Focus group to provide feedback on educational materials and mentoring program (Other)
Age: Adult, Older Adult · 21+ yrs
Sex: All
Sponsor: Rush University Medical Center
Primary completion: Aug 2021

Outcome Measures

Outcome	Result	p-value
PRIMARY Mastery Scale	21.65; 18.91; 22.13; 19.2	0.36
SECONDARY Loneliness Scale	5.64; 5.71	—
SECONDARY Short Zarit Burden Interview (ZBI-12)	23.18; 22.18	0.30
SECONDARY Hospital Anxiety and Depression Scale (HADS) - Anxiety Score	9.5; 8.79	0.1
SECONDARY Geriatric Depression Scale - Short Form (GDS-SF)	5.0; 4.22	0.04 sig
SECONDARY Dementia Attitudes Scale (DAS)	120.97; 104.25; 121.60; 111.57	—
SECONDARY Duration of Mentoring Calls	45.04	—
SECONDARY Hospital Anxiety and Depression Scale - Depression Score	6.32; 5.61	0.13

Summary

The investigators propose to adapt, improve, and implement a peer mentor support and caregiver education (PERSEVERE) program to improve LBD-specific caregiving mastery. Lewy body dementia (LBD) is the second most common dementia, comprising Parkinson's Disease (PD) dementia and Dementia with Lewy Bodies. LBD causes deterioration in multiple cognitive, motor, and neuropsychiatric domains, leading to heavy reliance on family caregivers. Patients with LBD are at a far greater risk of hospitalizations for falls, neuro-psychiatric symptoms, and infections, which are often preventable or treatable at home if recognized. Studies cite a crucial need for education and support of LBD caregivers, who face high rates of caregiver strain and adverse outcomes. Evidence from other chronic conditions supports peer mentoring as a potentially effective intervention to provide education and social support. PERSEVERE builds on our team's ongoing work of creating and testing a peer mentoring program for homebound PD patients' caregivers that has shown promising feasibility and acceptability. In the proposed project, the investigators will convene focus groups of former mentors and mentees, along with current caregivers, to provide formative information to shape the revised PERSEVERE curriculum that will include in-person mentor training and a comprehensive mentoring handbook. The curriculum will focus on key areas of LBD caregiving mastery, including: fall prevention, infections, neuropsychiatric symptoms (particularly hallucinations, delusions, anxiety, and depression), and advance directives. The investigators will enroll and train a new cohort of 36 LBD caregiver peer mentors who will be matched with 30 current LBD caregivers. Each pair will be instructed to speak on a weekly basis, using the 16-week structured curriculum as a framework. The study team will support the mentors with monthly conference calls and day-to-day availability for concerns. The investigators will assess the feasibility and fidelity of the intervention via online study diaries tracking the frequency, duration, and content of calls. During mentor training, the investigators will assess the change in mentors' caregiver mastery and LBD knowledge pre- and post-training. During the PERSEVERE intervention, the investigators will determine the change in mentees' caregiver mastery, LBD knowledge, and loneliness.

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).

View full record on ClinicalTrials.gov →

Data sourced from ClinicalTrials.gov (NCT04649164). Outcome figures and adverse-event rates are extracted automatically from the registry's posted results and are provided for clinician reference, not as a substitute for the primary publication.