Dementia, Caregiver Burden
Conditions
Brief summary
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.
Interventions
BEHAVIORALCoaching Sessions
The coach will use motivational interviewing techniques to: 1. To assist and guide the caregiver to establish a standby caregiver relationship 2. To assist and guide the caregiver as to how to use the EPT
Sponsors
University of California, Davis
National Institute on Aging (NIA)
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
PREVENTION
Masking
DOUBLE (Investigator, Outcomes Assessor)
Eligibility
Sex/Gender
ALL
Age
55 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Must be 55 years of age or older at the time of signing the informed consent * Must self-identify as the spouse or partner of the PWD (may be subject to independent verification per PI discretion, e.g., medical record review or a signed doctor's note) * Must provide some caregiving to a PWD * Must live in the same dwelling as the PWD
Exclusion criteria
* Diagnosis of dementia * Unable to use or does not have access to a computer * Complete deafness or blindness and/or unable to use a telephone * Condition that prevents them from performing caregiving duties or providing physical/emotional support to the PWD * Unable to follow directions * Unable to read or write in English * Participation in prior study involving the EPT
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Completion of the EPT six weeks from the baseline visit | Six weeks | This will be measured using de-identified data from the EPT system. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Identification and engagement of a standby caregiver six weeks from the baseline visit | Six weeks | This will be measured using de-identified data from the EPT system. |
| Change in caregiver preparedness from baseline to Month 3 | Three months | 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. |
| Change in caregiver confidence from baseline to Month 3 | Three months | 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). |
| Change in caregiving self-efficacy from baseline to Month 3 | Three months | 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. |
| Qualitative data and theme identification from participant experience surveys and EPT-C coaching session recordings | Three months | This will be measured using a qualitative descriptive approach and theme identification, based on participant experience surveys and EPT-C coaching session recordings. |
Countries
United States
Contacts
CONTACTRebecca S Boxer, MD, MS
PRINCIPAL_INVESTIGATORRebecca S Boxer, MD, MS
University of California, Davis
Outcome results
None listed