Memory advocate peers: Piloting a sustainable, replicable, volunteer peer mentor program to support individuals newly diagnosed with dementia and their care partners

Abstract

AbstractBackgroundAlzheimer’s disease and related dementias (ADRD) have an enormous impact on persons living with dementia and their care partners. Care partners of people with dementia are more likely to have depression, anxiety, and be isolated, heightened by events like the COVID‐19 pandemic. Connecting individuals to research has been challenging, especially in diverse populations who are disproportionately impacted by ADRD and health and socioeconomic inequities. The Memory Advocate Peers (MAP) Program aims to address these challenges by building and piloting a sustainable, replicable, volunteer peer mentor program to support individuals newly diagnosed with dementia and their care partners, and help to connect them to services.MethodThe MAP program has been developed and is led by people living with dementia, care partners, community‐based experts in dementia care, and healthcare leaders. The program will give people with dementia and care partners the opportunity to share experiences with a volunteer advocate who has lived experience with dementia, obtain valuable education about how to live well with dementia, connect to community services, and access clinical trials or other research opportunities. Partnerships have been established with New York University‐affiliated neurologists to identify and refer newly diagnosed patients to the program, and with the leading local research programs.ResultMAP will recruit and train up to 25 advocates to provide twelve months of post‐diagnostic support to 50 clients and care partners (where applicable), with a focus on under‐represented communities. A research study is embedded within the program to evaluate feasibility, as well as participant quality of life, health resource use, impact on psychological wellbeing, and value of research participation.ConclusionThis pilot will be critical in understanding the impact peer‐to‐peer mentorship can have for both the individual with ADRD and the care partner. It will also be critical to develop best practices to recruit, train and support volunteers serving as these peer advocates. Results from the pilot will be used to improve the program prior to expansion to other regions.