Addressing emotional distress in dyads of persons with a Young Onset Dementia (YOD) and their care-partners

A diagnosis of Young Onset Dementia (YOD) is emotionally difficult and often delayed because these conditions are uncommon and many patients exhibit early symptoms atypical for dementia (e.g., personality changes, reduced motivation and challenging behaviors). The emotional distress of the diagnosis process is amplified after a diagnosis is made due to role changes, relational conflict, poor prognosis, and lack of impactful treatments. If untreated this early emotional distress becomes chronic and impairs patients’ and care-partners’ ability to work together to plan for the considerable adjustments required as the patient experiences loses to independence, function and roles in the prime of their lives. With a supplement to R21 NR01797902, we developed and established the feasibility of Resilient Together-YOD (RT-YOD), the first dyadic (patient and care-partner together) resiliency program for patients with YODs and their care-partners. RT-YOD draws on mechanisms from the dyadic program “Recovering Together,” an NIH funded, feasible, well-accepted program associated with sustained improvement in emotional distress among dyads after acute brain injury. We now propose to conduct a single blind, virtual RCT (NIH stage 2) of RT-YOD versus a Health Enhancement Program control (HEP; N=194 dyads), to establish the efficacy and durability (3 months) of RT-YOD on emotional distress (primary outcome) and quality of life. We will also examine whether improvements occur through putative mechanisms and are moderated by relevant clinical and demographic factors. Our team is uniquely positioned to conduct this study with MPIs (Vranceanu, psychologist; Dickerson, neurologist; Syme, early stage geropsychology investigator) with prior collaboration on R21NR017979-02S1, complementary expertise and established infrastructure to allow for timely recruitment of dyads. Project Number: 1RF1AG096686-01 | Fiscal Year: 2025 | NIH Institute/Center: National Institute on Aging (NIA) | Principal Investigator: Ana-Maria Vranceanu (+2 co-PIs) | Institution: MASSACHUSETTS GENERAL HOSPITAL, BOSTON, MA | Award Amount: $3,379,666 | Activity Code: RF1 | Study Section: Special Emphasis Panel[ZRG1 SCIL-L (90)] View on NIH RePORTER: https://reporter.nih.gov/project-details/11229904