Clinical trial NCT04983693: Dementia-Friendly Faith Villages to Support African American Families
Official title: Dementia-Friendly Faith Villages to Support African American Families
Study type: INTERVENTIONAL
Overall status: COMPLETED
Phase: NA
Conditions: Dementia
Keywords: Dementia family caregiver
Lead sponsor: Emory University
Sponsor class: OTHER
Collaborators: name: Alzheimer's Association
First posted: 2021-07-30
Enrollment: 68
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Allocation: NA
Intervention model: SINGLE_GROUP
Intervention model description: This study will recruit 45 dyads of African American family caregivers and African American persons living with dementia.
Primary purpose: SUPPORTIVE_CARE

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.

Detailed description: Historically, churches have been the backbone of support for African American families. As a source of informal support, affiliations with churches serve as an extension to the family, providing social support to older African Americans not always available from close family and friends. African Americans often turn to their church and worship services for support when in distress. In recent years, the question that often arises is: "Are African American faith communities living out components of their church doctrine in relation to their love and commitment to one another?" Surprisingly, many African American churches do not have programs to support their congregation's aging-in-community or the families and congregants living with dementia.

African Americans are more likely than other racial/ethnic groups to be diagnosed with Alzheimer's disease or other forms of dementia, and 20% of persons living with dementia will be African American by 2050. Similarly, the number of their family caregivers will rapidly grow over the next 20 years. Currently, approximately 15 million family caregivers in the United States serve as significant care resources for persons living with dementia. Persons living with dementia experience progressive distress and confusion, which produces emotional strain, burden, social isolation, and depression for caregivers. This underscores the need to strengthen support services and identify resources and meaningful activities that promote physical and mental well-being for African American family caregivers and community-dwelling persons living with dementia.

Dementia restricts the person and the caregiver from participating in religious communities and familiar religious practices; both become increasingly uncomfortable in church settings due to fear of embarrassment, uncertainty about the person's behavior, and even stigma. The caregiving experience often leads to social isolation as caregivers devote all of their time to their family members, thus diminishing their ability to attend church and experience an atmosphere that can support them. Churches can also provide opportunities for individuals living with dementia to continue living in meaningful ways. Along with the setting, socializing with others can be a great strength for these individuals and their family members. Faith-based institutions play a significant role in the lives of individuals living with dementia, primarily through being present for them and the family members to support their quality of life. Research has shown separate benefits for caregivers attending church and the role religion plays in elders living with dementia. However, there is little work exploring how participation in religious practices together (caregiver and person living with dementia) might promote quality of life for these families. A dementia-friendly faith village worship service could provide a culturally organic way for such families to retain connection with a powerful social network.

This study will take place in the south Atlanta Metropolitan area. Two predominantly African American churches from Fulton and Fayette counties have been identified and are eager and enthusiastic to participate in this project. Interested caregivers will be screened for family eligibility via phone. If eligible, times will be scheduled to consent in person prior to data collection. Those consenting will agree to take part in baseline data collection, attend six dementia-friendly worship services in person or online, provide post-intervention data, and take part in more in-depth qualitative interviews. Caregivers will complete surveys and take part in interviews, while only observational data will be collected for persons living with dementia (PLWD).

Eligibility criteria: Inclusion Criteria for Caregivers:

* 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

Inclusion Criteria for Persons Living With Dementia:

* community-dwelling with memory impairment
* have a family caregiver willing to participate

Exclusion Criteria:

* none

Primary outcomes:
measure: Change in Zarit Burden Inventory Score
timeFrame: Baseline, Post-intervention (up to 8 weeks)
measure: Change in Expressive Support Scale Score
timeFrame: Baseline, Post-intervention (up to 8 weeks)
measure: Change in Positive Appraisal of Care Score
timeFrame: Baseline, Post-intervention (up to 8 weeks)
measure: Change in Dyadic Relationship Scale Caregiver Version Score
timeFrame: Baseline, Post-intervention (up to 8 weeks)
measure: Change in Revised Memory and Behavior Problem Checklist (RMBPC) Frequency Score
timeFrame: Baseline, Post-intervention (up to 8 weeks)
measure: Change in Revised Memory and Behavior Problem Checklist (RMBPC) Reaction Score
timeFrame: Baseline, Post-intervention (up to 8 weeks)
measure: Observation During Worship Service
timeFrame: Up to 8 weeks
Secondary outcomes:
measure: Post-intervention Interview
timeFrame: At the end of the intervention (up to 8 weeks)
Other outcomes:
Locations:
city: Atlanta
country: United States
facility: Emory University
state: Georgia
Study officials:
affiliation: Emory University
name: Fayron Epps, PhD, RN
role: PRINCIPAL_INVESTIGATOR
References: