Young Onset Dementia
Conditions
Keywords
Emotional Distress, Dyadic Intervention, Young Onset Dementia, Caregiving
Brief summary
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.
Interventions
BEHAVIORALResilient 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.
BEHAVIORALHealth Enhancement Program-YOD
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.
Sponsors
Massachusetts General Hospital
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
TREATMENT
Masking
DOUBLE (Subject, Outcomes Assessor)
Eligibility
Sex/Gender
ALL
Age
18 Years to 65 Years
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Change in Emotional Distress | 0 weeks, 6 weeks, 12 weeks | Hospital Depression and Anxiety Scale total score (HADS); 0-21 for each subscale (anxiety and depression), higher scores indicate greater anxiety or depression |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Change in Resiliency Factors (Mindfulness) | 0 weeks, 6 weeks, 12 weeks | Cognitive and Affective Mindfulness Scale (CAMS); 12-48, higher scores indicate greater perceived mindfulness |
| Change in Resiliency Factors (Individual Coping) | 0 week, 6 weeks, 12 weeks | 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) | 0 weeks, 6 weeks, 12 weeks | Applied Mindfulness Scale (AMPS); 0-60, higher scores indicate greater use of mindfulness practices. |
| Changes in Interpersonal Factors (Dyad Coping) | 0 weeks, 6 weeks, 12 weeks | Dyadic Coping Inventory (DCI); 37-185, higher scores indicate greater perceived coping in the context of a relationship |
| Changes in Resiliency Factors (Perceived Social Support) | 0 weeks, 6 weeks, 12 weeks | Multidimensional Scale of Perceived Social Support (MSPSS); 12-84, higher scores indicate greater perceived social support from family, friends, and significant others |
| Changes in Resiliency Factors (Values-based Living) | 0 weeks, 6 weeks, 12 weeks | Valuing Questionnaire (VQ); Progress and Obstruction Subscale Scores: 0-30, higher scores indicate living in greater accordance with one's values |
Countries
United States
Contacts
CONTACTAna-Maria Vranceanu, PhD
CONTACTMaggie L Syme, PhD, MPH
Outcome results
None listed