Peer Mentorship with Lewy Body Disease: A protocol for co‐developing and piloting a program for post‐diagnostic support

Abstract

AbstractBackgroundSocial isolation, loneliness and stigma are some of the most detrimental psychosocial effects of living with dementia, including Lewy Body Disease (LBD). Peer‐to‐peer support between newly diagnosed people living with LBD and more experienced people living with LBD has the potential to reap extremely positive effects for both parties, and their care partners (CP). This presentation will discuss a protocol and the developments of a project to co‐develop a peer mentorship program (PMP) with people living with LBD and their CP.MethodsCo‐design workshops with people living with LBD and their CPs will take place to co‐develop the curriculum for the PMP. The PMP will be delivered via video conference technology. Alongside this, collaborations with volunteer, community and social enterprises will be incorporated into the project design, to maximize shared learnings from other community led peer mentorship programs. Thus far these programs include peer mentorship programs for incarcerated individuals and those living with HIV.ResultsThe PMP is in the design stage and further components of this project are underway to incorporate the lived expertise of those with LBD and their CPs, as well as clinicians to the design. Recruitment of piloting participants for the PMP is expected in the second half of 2022.ConclusionThe PMP will offer guidance for shared experiential learning so that the person living with LBD and their CP will be better educated and equipped to support themselves and each other through the care pathway. The solution offered via the PMP contributes to improving access to information in an affordable way and to becoming integrated into the post‐diagnoses care pathway as an option for social prescribing.