Dementia-Friendly Faith Villages to Support African American Families

NCT04983693 | Completed

• 1 other identifier: IRB00114202
• Study Type: interventional
• Target: 68
• Locations: 1 country
• Sites: 1

Brief Summary

The purpose of this project is to develop and test the feasibility and preliminary effects of a program to enhance the capacity of predominantly African American churches to support congregants and their family caregivers who are living with dementia. In particular, this project will examine how dementia-friendly faith village worship services support the well-being of caregivers and care recipients in two African American churches.

Conditions

Dementia

Keywords

Dementia family caregiver

Outcome Measures

Primary Outcomes (7)

• Change in Zarit Burden Inventory Score

  The Zarit Burden Interview is a 22-item scale of objective and subjective caregiver burden. Responses are given on a 5-point scale where 0 = never and 4 = nearly always. Total scores range from 0 to 88 where higher scores indicate greater feelings of being burdened with providing care.

  Baseline, Post-intervention (up to 8 weeks)

• Change in Expressive Support Scale Score

  Socioemotional support is assessed with the Expressive Support Scale. This instrument includes 8 items measuring the amount of help and support that caregivers receive from relatives and friends. Responses are given on a 4-point scale where 1 = strongly disagree and 4 = strongly agree. Total scores range from 8 to 32 and higher scores indicate greater support.

  Baseline, Post-intervention (up to 8 weeks)

• Change in Positive Appraisal of Care Score

  Consequential gain is assessed with the Positive Appraisal of Care Scale. This instrument includes 6 items asking about personal, positive aspects of being a caregiver. Responses are given on a 4-point scale where 0 = not at all applicable and 3 = very much applicable. Total scores range from 0 to 18, where higher scores indicate greater positive consequential gain from caregiving.

  Baseline, Post-intervention (up to 8 weeks)

• Change in Dyadic Relationship Scale Caregiver Version Score

  The caregiver version of the Dyadic Relationship Scale includes 11 items which are responded to on a 4-point scale where 1 = strongly disagree and 4 = strongly agree. There are two subscales which assess dyadic strain (5 items) and positive dyadic interaction (6 items). Total scores for the dyadic strain subscale range from 5 to 20 and higher scores indicate greater levels of strain. Total scores for the positive dyadic interaction subscale range from 6 to 24 and higher scores indicate greater positive interactions.

  Baseline, Post-intervention (up to 8 weeks)

• Change in Revised Memory and Behavior Problem Checklist (RMBPC) Frequency Score

  The RMBPC is a 24-item scale reporting on frequency of disturbing care recipient behaviors and severity or caregiver reactions to these behaviors. Respondents indicate how frequently problems have occurred on a 5-point scale where 0 = never occurred and 4 = daily or more often. Total frequency scores range from 0 to 96 with higher scores indicating greater frequency of memory and behavior problems exhibited by the PLWD.

  Baseline, Post-intervention (up to 8 weeks)

• Change in Revised Memory and Behavior Problem Checklist (RMBPC) Reaction Score

  The RMBPC is a 24-item scale reporting on frequency of disturbing care recipient behaviors and severity or caregiver reactions to these behaviors. Respondents indicate the degree to which problems have bothered or upset them on a 5-point scale where 0 = not at all and 4 = extremely. Total reaction scores range from 0 to 96 with higher scores indicating more bothered or upset by memory and behavior problems exhibited by the PLWD.

  Baseline, Post-intervention (up to 8 weeks)

• Observation During Worship Service

  For in person worship services, observations will focus on interactions within the dyads, interactions of caregivers with church leaders and members of the congregation, and interactions of the PLWD with church leaders and the congregation. For online worship services the observations will focus on interactions within the dyads, and the response to the service of the PLWD. Observations of actions during the worship services are assessed qualitatively and a summary score is not determined.

  Up to 8 weeks

Secondary Outcomes (1)

• Post-intervention Interview

  At the end of the intervention (up to 8 weeks)

Study Arms (1)

Dementia-friendly Worship Service

EXPERIMENTAL

Caregiver and persons living with dementia dyads attending six dementia-friendly worship services in person or online.

Behavioral: Dementia-friendly Worship Service

Interventions

Dementia-friendly Worship Service BEHAVIORAL

Key elements of dementia-friendly worship services include familiar hymns, prayers and bible stories and short sermons. Participants can attend the worship services either in person or through online video streaming. Participant dyads should watch the six worship services together, over a span of 6 to 8 weeks.

Dementia-friendly Worship Service

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• at least 18 years of age
• caring (4 hours/per day of unpaid assistance) for a community-dwelling family or friend experiencing memory impairment
• able to read, speak, and understand English
• community-dwelling with memory impairment
• have a family caregiver willing to participate

You may not qualify if:

• none

Sponsors & Collaborators

• Emory University: lead
• Alzheimer's Association: collaborator

Study Sites (1)

Emory University

Atlanta, Georgia, 30322, United States

Location

MeSH Terms

Conditions

Dementia

Condition Hierarchy (Ancestors)

Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Neurocognitive Disorders; Mental Disorders

Study Officials

• Fayron Epps, PhD, RN

  Emory University

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: SUPPORTIVE CARE
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Assistant Professor

Model Details: This study will recruit 45 dyads of African American family caregivers and African American persons living with dementia.

Study Record Dates

• First Submitted: July 22, 2021
• First Posted: July 30, 2021
• Study Start: May 1, 2019
• Primary Completion: April 1, 2022
• Study Completion: April 1, 2022
• Last Updated: May 31, 2022

Record last verified: 2022-05

Data Sharing

• IPD Sharing: Will share
• Shared Documents: STUDY PROTOCOL
• Time Frame: Individual participant data will be available for sharing beginning 3 months and ending 5 years following article publication from this study.
• Access Criteria: Individual participant data will be available for sharing with researchers who provide a methodologically sound proposal, in order to achieve the aims in the approved proposal. Proposals should be directed to fepps@emory.edu. To gain access, data requestors will need to sign a data access agreement. Data are available for 5 years at a third party website.

Locations

US (1)