Equality in Caregiving: Facilitating Caregiver Mastery Among LGBT Caregivers of PLWD (EIC)

Emory University

Status: Completed

Conditions: Caregiver Burnout; Dementia

Treatments: Behavioral: Savvy Caregiver Program via Remote Learning; Behavioral: Focus group

Study type: Observational

Funder types: Other; NIH

Identifiers

NCT04394260

STUDY00002246

IRB00113264 (Other Identifier)

5P30AG064200-02 (U.S. NIH Grant/Contract)

Details and patient eligibility

About

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.

Full 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.

Enrollment: 10 patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• Self-identification as an LGBT adult (18 yrs and over)
• Providing informal care to a community dwelling adult family member or friend for at least 3 months OR
• Was formerly providing informal care to a community dwelling adult family member or friend for at least 6 months no more than 5 years ago
• Willing to participate in a one hour survey
• Agree to participate in up to 12 hours of clinical trial activities, including up to 6 hours of videos

Exclusion criteria

• Any significant diagnosed systemic illness or unstable diagnosed medical condition that could affect cognition (i.e. MCI), cause difficulty complying with the protocol or consenting for study procedures

Trial design

10 participants in 1 patient group

LGBT Caregivers Participating in a Focus Group

Description:

LGBT caregivers attending a focus group after watching the videos of the remote learning Savvy Caregiver Program. The focus group will guide modification of the Savvy Caregiver Program to meet the needs of LGBT caregivers of PLWD.

Treatment:

Behavioral: Savvy Caregiver Program via Remote Learning

Behavioral: Focus group