Addressing Emotional Distress in Dyads of Persons With a Young Onset Dementia (YOD) and Their Care-partners

Massachusetts General Hospital388 enrolled

Overview

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.

Study Type

INTERVENTIONAL

Allocation

RANDOMIZED

Purpose

TREATMENT

Masking

DOUBLE

Enrollment

388

Conditions

Young Onset Dementia

Interventions

Resilient Together-YOD

This 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-YODBEHAVIORAL

This 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.

Eligibility

Sex: ALLMin age: 18 YearsMax age: 65 Years

Medical Language ↔ Plain English

Inclusion Criteria: * Between the ages of 18-65 at the time of enrollment \[both patient and care-partner\] * Diagnosis of young-onset dementia (FTD, PPA, AD, PCA, etc.) with symptom onset prior to age 65 \[patient\] * A designated care-partner willing and interested to participate \[both patient and care-partner\] * Received YOD diagnosis in the past 6 month \[patient\] * English fluency and literacy \[both patient and care-partner\] * Cognitive ability to understand study and research protocol in order to consent to study participation per referring neurologist \[both patient and care-partner\] * Patient and/or caregiver exhibit emotional distress on screening (using HADS D and/or HADS A scores \> 7) Exclusion Criteria: * An additional, terminal diagnosis such as cancer * Lack of access to internet and/or a device with a camera * Current untreated or unstable severe mental health conditions like bipolar disorder, schizophrenia, or active substance use

Outcomes

Primary Outcomes

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