Collaborative Approaches to Resources, Education and Support( CARES) grants
2025 CARES projects($ 155,000 total awarded)
PERSEVERE-PLUS: Adapting a Peer Support Program for PSP and CBS Caregivers Rush University and University of Pennsylvania
Peer mEntoR Support and carEgiVER Education( PERSEVERE) is an evidence-based educational intervention that recruits and trains experienced Lewy body dementia( LBD) caregivers( mentors) to support newer LBD caregivers( mentees) using a structured, 12-week curriculum. PERSEVERE is now a National Institute of Aging-funded, national, randomized, attention-controlled trial testing longitudinal impact on caregiver strain and care recipient quality of life and healthcare utilization. This project will 1. Generate recommendations from experienced PSP / CBS caregivers to adapt PERSEVERE, 2. Solicit and collate relevant PSP / CBS references and educational material and 3. Select final program modifications to the PERSEVERE-PLUS program and gather community feedback to inform pilot methods.
Attitudes on Interdisciplinary Care for People with PSP, CBD and MSA University of Miami, Northwestern University and University of California, San Diego
There is limited scientific literature available specifically describing team-based, integrated care models for PSP, CBD and MSA. Many of the specialty interdisciplinary clinics that do exist for this disease population have been modeled after those for Parkinson’ s disease or other neurodegenerative diseases. Through concurrent surveys to be completed by CurePSP Center of Care clinicians and by people with lived experience with PSP, CBD or MSA, this project aims to characterize barriers and facilitators to accessing interdisciplinary care services as well as to propose novel outcome measures that can inform the development of scalable, sustainable models of interdisciplinary care in PSP, CBD and MSA.
Identifying barriers and facilitators to timely diagnosis of PSP, CBS, and MSA in underserved populations employing process mapping: A mixed-method approach
University of Alberta and University of Toronto
Co-funded in partnership with Parkinson Canada, this project will identify barriers and facilitators to the timely diagnosis of PSP, CBD and MSA in underserved populations across two Canadian provinces. The study will proceed in structured phases combining data mapping( retrospective review of anonymized patient records conducted across both sites to characterize diagnostic pathways, referral patterns and timeframes from symptom onset to confirmed diagnosis), stakeholder engagement( interviews with neurology providers and focus groups with patients and families) and process improvement methodologies.