Dementia
Conditions
Keywords
Caregiver, Dementia
Brief summary
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
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.
Interventions
OTHERCaregiver as Navigator: Develop Skills Online (CAN-DO) program
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.
OTHERHealthy Living online course
Online program for dementia family caregivers about Healthy Living for the first 4 months post-randomization.
Sponsors
National Institute on Aging (NIA)
Emory University
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Change in Dyadic Relationship Scale score | Baseline, 2, 4, 6, and 8 months post-intervention | 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. |
| Change in Perceived Stress Scale score | Baseline, 2, 4, 6, and 8 months post-intervention | 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. |
| Change in Caregiver Burden Index | Baseline, 2, 4, 6, and 8 months post-intervention | 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. |
| Change in Pearlin Caregiver Stress Scales score | Baseline, 2, 4, 6, and 8 months post-intervention | 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. |
| Change in Caregiver Assessment of Behavioral Skill scale score | Baseline, 2, 4, 6, and 8 months post-intervention | 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. |
| Change in State-Trait Anxiety Scale score | Baseline, 2, 4, 6, and 8 months post-intervention | 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. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Change in Quality of Life in Alzheimer's score | Baseline, 2, 4, 6, and 8 months post-intervention | This outcome will assess Care Recipient Quality of Life. The total possible score is 13-52; Higher score correlates with better outcome. |
| Change in Revised Memory and Behavior Problem Checklist score | Baseline, 2, 4, 6, and 8 months post-intervention | This outcome will assess Care Recipient Quality of Life. Total possible score: 0-96; Higher score correlates with worse outcome. |
Countries
United States
Contacts
Primary ContactCarolyn Clevenger, RN, DNP
Backup ContactMia Chester
Outcome results
None listed