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EPIC II (Early-Stage Partners in Care) is a research project designed to assist people with early-stage memory loss and their care partners by providing early-stage related education and skill-training sessions, held via Zoom, designed to reduce stress, enhance well-being, manage challenges, and plan for the future. Researchers will gather feedback from individuals about their experience to continue to improve programs for early-stage memory loss.
The purpose of this study is to help early-stage individuals who have early-stage memory loss or early stage dementia and their current or future care partners by providing education and skill-training programs, held via Zoom, designed to reduce stress and distress, increase well-being and quality of life, and plan for the future. About 160 early-stage dyads (person with early-stage dementia and his/her care partner) will be enrolled across the United States through Arizona State University.
People who decide to voluntarily participate in this program, will be asked to:
Each person will receive up to $45 for completing all follow-up interviews, or $20- 25 for each interview completed. All participants are offered the EPIC sessions shortly after their first interview or shortly after their 3-month interview. Some participants will also attend an additional free education workshop within one month of the initial assessment.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| EPIC A | Experimental | Group A will start the EPIC intervention immediately after assessment 1. The EPIC program consists of a 7-session, psychoeducational skills training intervention, held via Zoom, designed to provide education and skills on how to prepare for the future and reduce stress regarding memory changes and loss for both the person with early-stage dementia and their care partner. Following the 7 EPIC sessions, participants will attend monthly booster sessions, held via Zoom, to reinforce the skills/lessons. Participants may voluntarily choose to continue attending booster sessions through 2024. |
|
| EPIC B (WLC) | Active Comparator | Group B - the wait list comparison (WLC) group - will have a 75-minute group education session (comparator intervention), held via Zoom, about 3 weeks after baseline assessment. The WLC session is an overview of memory loss/dementia and its related impact for EPs and CPs and an overview of aging network services in the community. They will receive a brief telephone check-in call approximately 3 weeks before the T2 assessment. The WLC group will start the complete EPIC psychoeducational skills training intervention, held via Zoom, immediately after Assessment 2. Following completion of the 7 EPIC sessions, participants will attend monthly booster sessions, held via Zoom, to reinforce the skills/lessons. Participants may voluntarily choose to continue attending booster sessions through 2024. |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| psychoeducational skills training intervention | Behavioral | This protocol is a minimal risk care values clarification /care planning and psychoeducational skills training intervention, delivered as a workshop series plus one in-home session for people in the early stages of memory loss and their care partner together. |
| Measure | Description | Time Frame |
|---|---|---|
| EP and CP Emotional well-being | Examine the efficacy of the EPIC intervention as compared with a Wait List Comparison condition by looking at the change over time in the Positive and Negative Affect Scales (Dementia Quality of Life Instrument). | Assessments T1-T3 to be conducted over span of six months |
| EP Quality of Life | Assess EP Quality of life and CPs perception of EPs Quality of life by looking at the change over time in the Quality of Life Measure in Dementia. | Assessments T1-T3 to be conducted over span of six months |
| Measure | Description | Time Frame |
|---|---|---|
| Knowledge and Use of Services for People with Dementia and their Care Partners | Assess the knowledge of, use of, and satisfaction with a variety of services (for example, respite, support groups, case management, referral services) relevant to people with dementia and their care partners by looking at the change over time. | Assessments T1-T3 to be conducted over span of six months |
| Measure | Description | Time Frame |
|---|---|---|
| Initial incremental cost effectiveness of EPIC compared with Wait List Comparison condition | Based on Quality of Life Adjusted Years for the EPs and hours providing care for CPs, conduct a cost benefit analysis to explicitly indicate whether benefits of the EPIC program outweigh costs by looking at the change over time. | T1 - T2 Assessments (Baseline to 3 months) |
DYAD INCLUSION CRITERIA:
EP INCLUSION CRITERIA:
EP EXCLUSION CRITERIA:
Denying or not reporting any trouble with memory, based on self-report
Normal cognition, based on score derived from screening tool
If yes to BOTH:
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| Name | Affiliation | Role |
|---|---|---|
| David W. Coon, PhD | Arizona State University | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Nationwide Program Locations (Based at ASU Edson College of Nursing and Health Innovation) | Phoenix | Arizona | 85004 | United States |
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| ID | Term |
|---|---|
| D003704 | Dementia |
| D000544 | Alzheimer Disease |
| D008569 | Memory Disorders |
| ID | Term |
|---|---|
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
| D019965 | Neurocognitive Disorders |
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Dyads will be randomized (assigned by chance) to one of two groups: 10 EPIC A or 2) EPIC B (Wait List Control - WLC. Randomization with stratification by language preference (English vs. Spanish) and geographic setting will occur in sets of 4 to 8 (average 6) eligible dyads.
The RCT ends at T2 with comparison of changes in outcomes between EPIC and WLC participants from Assessment 1 (baseline) to Assessment 2 (3 months post baseline). T2-T3 assessments will be used for within-group and maintenance of gains analyses from about 3 months to 6 months post baseline.
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| Communication Skills and Support within the Dyad | Assess communication by looking at the change over time in the Dyadic Relationship Scale and Emotional Intimacy Disruptive Behavior Scale. | Assessments T1-T3 to be conducted over span of six months |
| EP and CP Care preparedness | Assess EP and CP perceptions of how well prepared they feel for addressing future care needs by looking at the change over time in the Care Partners Preparedness Scale (modified). | Assessments T1-T3 to be conducted over span of six months |
| D001523 | Mental Disorders |
| D024801 | Tauopathies |
| D019636 | Neurodegenerative Diseases |
| D019954 | Neurobehavioral Manifestations |
| D009461 | Neurologic Manifestations |
| D012816 | Signs and Symptoms |
| D013568 | Pathological Conditions, Signs and Symptoms |