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| ID | Type | Description | Link |
|---|---|---|---|
| 1R21AG089840-01 | U.S. NIH Grant/Contract | View source | |
| 5R21AG089840-02 | U.S. NIH Grant/Contract | View source |
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| Name | Class |
|---|---|
| National Institute on Aging (NIA) | NIH |
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The proposed research will develop and test an online Emergency Preparedness Toolkit to help caregivers prepare for their own unexpected health events. Caregivers of persons with dementia often ignore their own health needs as their primary focus is the care of the person with dementia. This can lead to a caregiver delaying their own care and subsequently emergent health events. The Emergency Preparedness Toolkit provides guidance to the caregiver as to how to identify and transfer care to a standby caregiver. The goal is to provide a caregiver with the security and comfort that the person with dementia will be well cared for while they care for their own health needs.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| EPT-C | Active Comparator | The EPT-C group will receive two coaching sessions to assist with the completion of the EPT. |
|
| EPT-A | No Intervention | The EPT-A group will be responsible for completing the EPT alone, without coaching sessions. |
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Coaching Sessions | Behavioral | The coach will use motivational interviewing techniques to:
|
| Measure | Description | Time Frame |
|---|---|---|
| Completion of the EPT six weeks from the baseline visit | This will be measured using de-identified data from the EPT system. | Six weeks |
| Measure | Description | Time Frame |
|---|---|---|
| Identification and engagement of a standby caregiver six weeks from the baseline visit | This will be measured using de-identified data from the EPT system. | Six weeks |
| Change in caregiver preparedness from baseline to Month 3 |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Affiliation | Role |
|---|---|---|
| Rebecca S Boxer, MD, MS | University of California, Davis | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University of California - Davis | Sacramento | California | 95817 | United States |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 19585957 | Background | Brodaty H, Donkin M. Family caregivers of people with dementia. Dialogues Clin Neurosci. 2009;11(2):217-28. doi: 10.31887/DCNS.2009.11.2/hbrodaty. | |
| 31158025 | Background | Ornstein KA, Wolff JL, Bollens-Lund E, Rahman OK, Kelley AS. Spousal Caregivers Are Caregiving Alone In The Last Years Of Life. Health Aff (Millwood). 2019 Jun;38(6):964-972. doi: 10.1377/hlthaff.2019.00087. |
| Label | URL |
|---|---|
| AARP, National Alliance for Caregiving. Caregiving in the U.S. 2020. AARP; 2020. doi:10.26419/ppi.00103.001 | View source |
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| ID | Term |
|---|---|
| D003704 | Dementia |
| D000084802 | Caregiver Burden |
| ID | Term |
|---|---|
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
| D019965 | Neurocognitive Disorders |
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This will be measured using the Caregiver Preparedness Scale (CPS). Responses are rated from 0 to 4. The higher the score, the more prepared the caregiver feels for caregiver; the lower the score, the less prepared the caregiver feels.
| Three months |
| Change in caregiver confidence from baseline to Month 3 | This will be measured using a Likert scale of caregiver confidence from "completely confident" to "not at all confident". Responses will be grouped into two categories: confident (completely confident, fairly confident, or somewhat confident) or not confident (slightly confident or not at all confident). | Three months |
| Change in caregiving self-efficacy from baseline to Month 3 | This will be measured using the Revised Scale for Caregiver Self-Efficacy (RSCSE). Responses are rated from 0 to 100. The higher the score, the more self-efficacious the caregiver feels about caregiving; the lower the score, the less self-efficacious the caregiver feels. | Three months |
| Qualitative data and theme identification from participant experience surveys and EPT-C coaching session recordings | This will be measured using a qualitative descriptive approach and theme identification, based on participant experience surveys and EPT-C coaching session recordings. | Three months |
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| D001523 | Mental Disorders |
| D013315 | Stress, Psychological |
| D001526 | Behavioral Symptoms |
| D001519 | Behavior |