Learning to PERSEVERE: Peer Mentor Support and Caregiver Education in Lewy Body Dementia
Condition: Lewy Body Disease; Parkinson Disease Dementia; Dementia With Lewy Bodies
MeSH terms: Parkinson Disease; Dementia; Alzheimer Disease; Lewy Body Disease
Study type: Interventional

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.
    

Detailed description: 
      Scientific Premise. PERSEVERE is a theory-based intervention that applies Social Cognitive
      Theory constructs to the revised Stress Process Model to improve caregiving mastery and
      ultimately, outcomes. PERSEVERE targets education about common causes of hospitalization in
      LBD patients combined with social support from trained peer mentors to enhance caregivers'
      mastery and LBD knowledge. Social Cognitive Theory (SCT) proposes that behavior change is
      dynamic, affected by expectations, observational learning, and reciprocal influences from the
      environment.

      Study procedures. Aim 1 (Fall 2020): Revise the mentor training curriculum, conversation
      guides, and resource handbook. The team will convene focus groups of previously trained
      mentors, LBD caregivers, and LBD professionals, present each group with the original mentor
      curriculum (training presentation slides and handbook) and the proposed educational resources
      for inclusion in the revised curriculum and obtain their feedback. Framework analysis will be
      used to guide the revision of the mentoring curriculum, with provision of practical
      checklists, goal setting, and step-by-step guides for key areas of LBD caregiving mastery in
      addition to social support, structured as the 16-week PERSEVERE curriculum.

      Aim 2 (Winter 2021): Recruit and screen 36 peer mentors as PERSEVERE is being revised,
      followed by two 6-7 hour training sessions for mentors in early 2021. Each selected mentor
      will attend one training session, where the following content will be delivered: 1) study
      logistics, expectations, and informed consent; 2) baseline mentor data collection; 3) active
      listening, mentoring, goal- and boundary-setting; 4) overview of LBD, risk factors for
      hospitalization, impact on caregiver; and 5) practical approaches to symptom management and
      caregiving issues. The week-by-week PERSEVERE curriculum will be presented along with the
      accompanying handbook. The investigators will solicit questions and role-play conversations.
      The study team will encourage mentors to direct their mentees to call their respective
      medical teams with specific medical questions, however the study team will inform the mentors
      that they may contact the study team directly for non-emergent advice and resources. Mentors
      will complete post-training assessments and will receive a training stipend. Mentors'
      caregiver mastery will be assessed using Pearlin and Schooler's scale pre- and post-training.

      Aim 3 (Spring-Summer 2021): Recruit 30 LBD caregivers and conduct baseline assessments
      including demographics, relationship to LBD patient, and duration of caregiving. Mentors will
      be matched to caregivers by relationship to LBD patient, then by sex and age, as much as
      possible. Mentor-mentee pairs will be formed and the PERSEVERE handbook and contact
      information will be distributed. 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. Discussions are not scripted and will not necessarily be
      limited to that week's topics. Mentors and mentees will complete online study diaries every 2
      weeks, assessing intervention fidelity. Up to 3 reminders will be sent to complete each study
      diary, and if missing, a team member will call the participant(s). Mentors will participate
      in a total of 4 recorded monthly conferences with the study team. Mentees' caregiver mastery,
      strain, anxiety, and depression will be assessed at baseline and after the 16-week program.
      Feasibility will be assessed via online surveys and study team phone call follow-up.

      This pilot study will determine the necessary qualities of mentors and matching, the content
      of the mentor training and PERSEVERE handbook, and the effect sizes of the intervention to
      determine the sample size for a forthcoming R01.
    

Intervention name(s): Peer mentor support and caregiver intervention; Focus group to provide feedback on educational materials and mentoring program
Intervention type(s): Behavioral; Other
Intervention description(s): Sixteen-week modular curriculum with printed/online workbook, additional resources, and weekly phone discussion with Lewy Body Dementia peer mentor.; Participation in a 2-3 hour focus group to review pilot and revised materials and provide feedback
Allocation: Non-Randomized
Intervention model: Single Group Assignment
Masking: None (Open Label)
Primary purpose: Supportive Care
Keywords: caregiver strain; caregiving mastery; peer mentor; caregiver education; Lewy Body Disease; Parkinson's Disease; social support