Caregiver as Navigator: Develop Skills Online (CAN-DO)

Study Overview
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Brief Summary
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This study is designed to learn more about ways to promote caregiver mastery online. 270 dementia family caregivers will be enrolled and randomized to take the CAN-DO online course immediately or after a waiting period. They will participate in interviews before and after the course; total time of study participation is 6 months.

Detailed Description
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Family members and friends are the core of the uncoordinated system of care that tenuously maintains persons living with dementia in their community settings and delays their placement into more costly settings of institutional care, providing more contributed and out of pocket care support than Medicare and Medicaid combined. The CAN-DO program fills a significant gap in caregiver psychoeducation programming by focusing not principally on day-to-day care management but on the many substantial system navigation tasks that caregivers assume. Supported by preliminary efficacy data, CAN-DO will employ state-of-the art asynchronous interactive learning methods to enhance caregivers' mastery of skills and confidence to navigate healthcare and other (legal, financial, social service, and family) systems that are crucial to the continued community living of persons affected with dementia illnesses. This study will enroll 270 dementia family caregivers who will be randomized to take the CAN-DO course immediately or after a waiting period. They will participate in interviews before and after the course; total time of study participation is 6 months.

Official Title
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Caregiver as Navigator: Develop Skills Online (CAN-DO) Developing Dementia Family Caregiver Mastery for Navigating Complex Health, Social Service, Legal, Financial, and Family Systems

Conditions
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Dementia

Intervention / Treatment
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* Other: Caregiver as Navigator: Develop Skills Online (CAN-DO) program
* Other: Healthy Living online course


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Family member or friend providing at least 4 hours per week of informal care for a community-dwelling person living with ADRD 18 years or older Has internet access Does not have to co-reside with the individual Understands, speaks, and reads English Exclusion Criteria: Family caregiver plans to move care recipient to an institutional setting within the next six months Care recipient currently enrolled in hospice

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Design Details

Primary Purpose: Supportive Care
Allocation: Randomized
Intervention Model: Parallel Assignment
Masking: None (Open Label)


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Experimental: CAN-DO Immediate program group<br>Each participant will be engaged in a baseline interview. Subsequently, each will be asked to take part in follow-up interviews at points 2, 4, 6, and 8 months following the launch of their cohort. | Other: Caregiver as Navigator: Develop Skills Online (CAN-DO) program<br>* Online, asynchronous psychoeducation program for dementia family caregivers. The program is meant to enhance caregivers' knowledge and skills for navigating healthcare, financial, legal, and family systems. The program has three main sections. The first section provides information and how to prepare for using the healthcare system and community-based services in dementia care and support. The second provides information about how to be more effective when using the financial and legal system either for yourself or your person. The third section of the course provides information about ways to manage and navigate family dynamics present in various caregiving scenarios more effectively.<br>* Other names: CAN-DO;|
| Active Comparator: Attention Control program group<br>Participants will receive an online course about Healthy Living for the first 4 months after randomization. After the Attention Control participants complete their 4-month interview, they will be invited to participate in the CAN-DO program. | Other: Caregiver as Navigator: Develop Skills Online (CAN-DO) program<br>* Online, asynchronous psychoeducation program for dementia family caregivers. The program is meant to enhance caregivers' knowledge and skills for navigating healthcare, financial, legal, and family systems. The program has three main sections. The first section provides information and how to prepare for using the healthcare system and community-based services in dementia care and support. The second provides information about how to be more effective when using the financial and legal system either for yourself or your person. The third section of the course provides information about ways to manage and navigate family dynamics present in various caregiving scenarios more effectively.<br>* Other names: CAN-DO;Other: Healthy Living online course<br>* Online program for dementia family caregivers about Healthy Living for the first 4 months post-randomization.<br>|
| Active Comparator: Usual care group<br>Participants randomized to the Usual care group will not receive intervention from the study but after they complete their 4-month interview, they will be invited to participate in the CAN-DO program. | Other: Caregiver as Navigator: Develop Skills Online (CAN-DO) program<br>* Online, asynchronous psychoeducation program for dementia family caregivers. The program is meant to enhance caregivers' knowledge and skills for navigating healthcare, financial, legal, and family systems. The program has three main sections. The first section provides information and how to prepare for using the healthcare system and community-based services in dementia care and support. The second provides information about how to be more effective when using the financial and legal system either for yourself or your person. The third section of the course provides information about ways to manage and navigate family dynamics present in various caregiving scenarios more effectively.<br>* Other names: CAN-DO;|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Change in Pearlin Caregiver Stress Scales score | This primary outcome will measure Caregiver Mastery (including Competence, Confidence, Management of Situation). The Pearlin caregiver scale includes 8 items, with a rating from 1-4 for each of them. Total possible score range is 8-32. Higher score correlates with better outcome. | Baseline, 2, 4, 6, and 8 months post-intervention | 
| Change in Caregiver Assessment of Behavioral Skill scale score | This study outcome will also measure Caregiver Mastery. Caregiver Assessment of Behavioral Skills score will be assessed using the Fortinsky scale that includes 17 items rated from 0-3 each. Possible score range is 0-51. Higher score correlates with better outcome. | Baseline, 2, 4, 6, and 8 months post-intervention | 
| Change in State-Trait Anxiety Scale score | This outcome will measure Caregiver Emotional Wellbeing. The State-Trait Anxiety Scale includes 20 items, each of them rated 1-4. Total possible score range 20-80 with higher score correlated with better study outcome. | Baseline, 2, 4, 6, and 8 months post-intervention | 
| Change in Perceived Stress Scale score | This outcome will measure Caregiver Emotional Wellbeing. The Perceived Stress Scale includes 10 items, each of them rated 1-5, with a total possible score 10-50. Lower score correlates with better study outcome. | Baseline, 2, 4, 6, and 8 months post-intervention | 
| Change in Caregiver Burden Index | This outcome will measure Caregiver Emotional Wellbeing. The caregiver burden Index includes 22 items, each of them rated 0-4, with a total possible score 0-88. Lower score correlates with better study outcome. | Baseline, 2, 4, 6, and 8 months post-intervention | 
| Change in Dyadic Relationship Scale score | This outcome will assess Caregiver Emotional Wellbeing. The Dyadic Relationship Scale includes 11 items rated from 1 to 4, with a total possible score range 11-44. Higher score correlates with better outcome. | Baseline, 2, 4, 6, and 8 months post-intervention | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Change in Revised Memory and Behavior Problem Checklist score | This outcome will assess Care Recipient Quality of Life. Total possible score: 0-96; Higher score correlates with worse outcome. | Baseline, 2, 4, 6, and 8 months post-intervention | 
| Change in Quality of Life in Alzheimer's score | This outcome will assess Care Recipient Quality of Life. The total possible score is 13-52; Higher score correlates with better outcome. | Baseline, 2, 4, 6, and 8 months post-intervention | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Caregiver, Dementia