About this trial
The goal of this clinical trial is to learn if the Dementia Caregivers' Link to Assistance and Resources (DECLARE) program can improve support of, and engagement with, caregivers of home health patients with dementia. DECLARE includes a caregiver self-assessment that is reported in the home health patient record, and increased access to social work for cases including dementia caregivers. The main questions we aim to answer are:
* Will most caregivers who are offered the chance to complete an assessment choose to do so? * Will clinicians report that the assessment information was useful? * Will the rate of social work access increase for cases with patients with dementia who have involved family caregivers?
Researchers will compare DECLARE to usual care to see if taking part in the program increases caregiver self-efficacy and access to social work.
Participants will:
* Answer a short series of assessment questions and questions about their caregiving experiences at the beginning of the home health episode. * Receive a social work visit from a Licensed Social Worker trained in dementia care. * Answer a series of follow-up questions about their caregiving experiences at the end of the home health episode.
Eligibility criteria
This trial accepts healthy volunteersQualifiers
Individual must be listed as the caregiver of record for a patient receiving home health care from the partner home health agency and have a phone number on file; the patient must meet the inclusion criteria listed below.
Home health patient (care recipient) must have a documented dementia diagnosis on the home health assessment, be 65 years or older, and have Traditional Medicare or Medicare Advantage as their primary payer for the home health episode.
Disqualifiers
Caregivers are excluded if they are unable to communicate in English.
Trial design
Parallel
Treatments tested in this trial
Dementia Caregivers' Link to Assistance and Resources (DECLARE)
Other interventionThe intervention for treatment branches includes two parallel processes: (1) calling eligible caregivers to field a self-assessment instrument and upload caregiver responses to the patient record, and (2) identifying and flagging cases for expedited social work access with dementia-trained social workers.
Treatment groups
Trial outcomes
Primary outcomes
Completion rate for DECLARE caregiver assessments
A proportion. Numerator: the number of eligible caregivers who complete the DECLARE assessment. Denominator: the number of eligible caregivers who are contacted and asked to complete the DECLARE assessment at the start of the episode.
Caregiver Self-Efficacy
Caregiver self-efficacy, as measured by caregiver score on the Caregiver Self-Efficacy (CSE-4) 4-item scale developed by Merrilees, et al (2020).
Secondary outcomes
Acceptability among Clinicians
Clinician ratings (in repeated surveys across the study timeframe) of DECLARE's usefulness and relevance to clinical practice on 5-item Likert scales.
Access to Social Work
The proportion of eligible cases who receive a social work visit, comparing the treatment to comparison arms.
Acceptability among Caregivers
Among caregivers in treatment arm, ratings on 5-item Likert scales of the value of the assessment and whether they would choose to complete the assessment again. (Questions fielded during follow-up surveys at the end of the home health episode)
Sponsors and contacts
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Visiting Nurse Service of New York
Lead sponsor
National Institute on Aging (NIA)
Collaborator