The purpose of the present investigation is to test the efficacy of a virtual, brief (6 sessions) dyadic (patient and care-partner together) intervention to prevent chronic emotional distress in dyads where one person is diagnosed with Young Onset Dementia (YOD). Through this study, we seek to address the unmet need of preventing chronic emotional distress in YOD dyads through a feasible, acceptable and credible program, and ideally enhance resiliency and improve wellbeing and quality of life in both members of the dyad.
40 years of age or older
Diagnosis of young-onset dementia (FTD, PPA, AD, PCA, etc.) with symptom onset prior to age 65 or evidence of familial AD onset up to age 70
Received YOD diagnosis in the past 10 months
English fluency and literacy
An additional, terminal diagnosis such as cancer
Unwillingness to participate and use zoom for video conferencing
Current untreated or unstable severe mental health conditions like bipolar disorder, schizophrenia, or active substance use
Parallel
Resilient Together-YOD
BehavioralThis is a 6 session dyadic (patient and spousal care-partner) intervention that teaches resiliency and interpersonal communication skills early after YOD diagnoses. It aims to decrease heightened symptoms of depression and anxiety among dyads to help them engage in important decisions around long term care-planning and optimize adjustment. The goal is to equip dyads with the necessary skills to cope and engage in meaningful, challenging conversations around care-planning, symptom deterioration, work/family planning to improve well-being in both members of the dyad.
Health Enhancement Program-YOD
BehavioralThis is a 6 session program that will deliver educational information to dyads and will mimic the dose and duration of Resilient Together. The program will not teach any individual and dyadic interpersonal skills, but will contain education on psychological distress and healthy behaviors. Sessions will also be delivered virtually.
Change in Emotional Distress
Hospital Depression and Anxiety Scale total score (HADS); 0-21 for each subscale (anxiety and depression), higher scores indicate greater anxiety or depression
Change in Resiliency Factors (Mindfulness)
Cognitive and Affective Mindfulness Scale (CAMS); 12-48, higher scores indicate greater perceived mindfulness
Change in Resiliency Factors (Individual Coping)
Measure of Current Status Part A (MOCS-A) Assertiveness and Coping Confidence subscales; Subscale scores: 0-4; higher scores indicate greater perceived ability to cope
Change in Resiliency Factors (Mindfulness Utilization)
Applied Mindfulness Scale (AMPS); 0-60, higher scores indicate greater use of mindfulness practices.
Changes in Interpersonal Factors (Dyad Coping)
Dyadic Coping Inventory (DCI); 37-185, higher scores indicate greater perceived coping in the context of a relationship
Global Impressions of Change
Modified Global Impressions of Chance (MGIC); 1-7, higher scores indicate greater perceived change in outcomes
Cognition
Montreal Cognitive Assessment (MoCA); 0-30, lower scores indicate greater cognitive dysfunction
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