Clinical Trial Details
— Status: Completed
Administrative data
NCT number |
NCT04394260 |
Other study ID # |
STUDY00002246 |
Secondary ID |
IRB001132645P30A |
Status |
Completed |
Phase |
|
First received |
|
Last updated |
|
Start date |
May 20, 2021 |
Est. completion date |
February 14, 2022 |
Study information
Verified date |
March 2023 |
Source |
Emory University |
Contact |
n/a |
Is FDA regulated |
No |
Health authority |
|
Study type |
Observational
|
Clinical Trial Summary
The goal of this study is to adapt existing Savvy Caregiving Program (SCP) for lesbian, gay,
bisexual, transgender (LGBT) caregivers of person living with dementia (PLWD). After watching
the SCP Remote Learning videos, participants will attend a focus group to discuss how the
program could be changed to meet the specific needs of LGBT caregivers of PLWD.
Description:
Over 15 million family caregivers provide more than $200 billion in unpaid care to a person
living with dementia (PLWD). This dynamic has been shown to influence the PLWD, as well as
the physiological and psychological health of the caregiver. Depression and stress have been
linked to caregiving, and both are independent risk factors for dementia. In addition to
subjective indices of stress and depression, stress biomarkers have been shown to be higher
in dementia caregivers vs. non-caregivers.
The complex caregiving experience depends on many factors, including the disease state of the
PLWD, the nature of the relationship (spouse vs. child vs. friend), as well as the race,
ethnicity, gender identity, and sexual orientation of the individuals involved. Informal
caregiving for PLWD by lesbian, gay, bisexual, and transgender (LGBT) individuals continues
to receive limited attention, and current research rarely examines how caregiving for PLWD
affects the LGBT community. Estimates of the number of LGBT adult caregivers range from 27%
to more than 45%.
Although the National Institutes of Health and the Institute of Medicine have recently
emphasized the disparity in LGBT aging issues, little is known about stress experienced by
LGBT caregivers compared with non-LGBT caregivers. Research with LGBT caregivers of PLWD has
shown that they experience higher rates of physical, emotional, and financial strain, and are
more likely to help with medical/nursing tasks. Higher levels of LGBT caregiver stress may be
due to the fact that LGBT caregivers are less likely to seek out supportive services or
disclose their LGBT identities. Higher rates of caregiving stress for LGBT caregivers may
stem from years of stigma and failure of current interventions and resources to assess the
unique stressors of LGBT persons adequately. Fear of discrimination, denial of services, and
receiving poor-quality services may also contribute to reluctance to seek assistance.
Moreover, LGBT persons are more likely to suffer from behavioral, psychological and
physiological health issues than non-LGBT persons, all of which are independent predictors of
Alzheimer's disease and related dementias (ADRD).
The Savvy Caregiver Program (SCP) was developed by Kenneth Hepburn PhD to train informal
caregivers of community dwelling PLWD. The SCP consists of educational instruction and
in-class exercises that engage participants on a functional level. Course material was
designed to provide informal caregivers with the knowledge, skills, and attitude needed to
carry out their role as a caregiver for a PLWD. The existing SCP is comprised of weekly,
two-hour interactive classes, over six consecutive weeks. Dr. Hepburn and his team also
created four, one hour and 45 minute long, videos to be used as a method of remote learning
that cover the same material as the in-person program. These videos will be used in this
study.
The primary goal of this study is to adapt the SCP to address the context-specific challenges
faced by LGBT informal caregivers of PLWD, in preparation for a larger efficacy trial. The
researchers will conduct focus groups to engage LGBT caregivers and a LGBT Community Advisory
Board in the process of adapting the existing SCP to their needs.