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

NCT ID: NCT04394260

Last Updated: 2023-03-10

Basic Information

• Recruitment Status: COMPLETED
• Total Enrollment: 10 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 2021-05-20
• Study Completion Date: 2022-02-14

Brief 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.

Detailed 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.

Conditions

Dementia; Caregiver Burnout

Study Design

• Observational Model Type: CASE_ONLY
• Study Time Perspective: CROSS_SECTIONAL

Study Groups

LGBT Caregivers Participating in a Focus Group

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.

Savvy Caregiver Program via Remote Learning

Intervention Type: BEHAVIORAL

The SCP program is comprised of four pre-recorded Savvy Caregiver videos (each 1 hour and 45 minutes in length). 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 person living with dementia (PLWD). Course learning objectives include: 1) introduction to dementing disorder; 2) caregiver self-care; 3) the anchors of enjoyable involvement; 4) levels of thinking and performance; 5) strengthening the family as a resource for caregiving; and 6) review and integration of the previous sections.

Focus group

Intervention Type: BEHAVIORAL

After watching the Savvy Caregiver videos participants will take part in a focus group to discuss their experience with the SCP and how the course material applies to them as a LGBT caregiver. The semi-structured discussion will include, but not be limited to the following questions: 1) Can you tell me about your role as a caregiver? (Probes: living situation, experiences, challenges). 2) What went well with the SCP, and what could be improved? 3) How relevant to your situation as an LGBT caregiver were the course materials? 4) How well did the questionnaire reflect your experiences with discrimination due to sexual orientation and/or gender identity? (Probe about when working with your care recipient's health care providers, in-home aides/visiting nurses, adult day care staff, respite, etc? 5) What are some of the additional caregiver challenges that should be considered in these questionnaires? (Probes: mental health, physical health, and social life strain, Quality of life, stress).

Interventions

Savvy Caregiver Program via Remote Learning

The SCP program is comprised of four pre-recorded Savvy Caregiver videos (each 1 hour and 45 minutes in length). 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 person living with dementia (PLWD). Course learning objectives include: 1) introduction to dementing disorder; 2) caregiver self-care; 3) the anchors of enjoyable involvement; 4) levels of thinking and performance; 5) strengthening the family as a resource for caregiving; and 6) review and integration of the previous sections.

Intervention Type: BEHAVIORAL

Focus group

After watching the Savvy Caregiver videos participants will take part in a focus group to discuss their experience with the SCP and how the course material applies to them as a LGBT caregiver. The semi-structured discussion will include, but not be limited to the following questions: 1) Can you tell me about your role as a caregiver? (Probes: living situation, experiences, challenges). 2) What went well with the SCP, and what could be improved? 3) How relevant to your situation as an LGBT caregiver were the course materials? 4) How well did the questionnaire reflect your experiences with discrimination due to sexual orientation and/or gender identity? (Probe about when working with your care recipient's health care providers, in-home aides/visiting nurses, adult day care staff, respite, etc? 5) What are some of the additional caregiver challenges that should be considered in these questionnaires? (Probes: mental health, physical health, and social life strain, Quality of life, stress).

Intervention Type: BEHAVIORAL

Other Intervention Names

Savvy Caregiver Program provided via Pre-Recorded Video

Eligibility Criteria

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

• Minimum Eligible Age: 18 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

National Institute on Aging (NIA)

NIH

Sponsor Role: collaborator

Emory University

OTHER

Sponsor Role: lead

Responsible Party

Whitney Wharton

Associate Professor

Responsibility Role: PRINCIPAL_INVESTIGATOR

Principal Investigators

Whitney Wharton, PhD

Role: PRINCIPAL_INVESTIGATOR

Emory University

Locations

Emory Goizueta Alzheimer's Disease Research Center (ADRC)

Atlanta, Georgia, United States

Countries

United States

Other Identifiers

IRB00113264

Identifier Type: OTHER

Identifier Source: secondary_id

5P30AG064200-02

Identifier Type: NIH

Identifier Source: secondary_id

View Link

STUDY00002246

Identifier Type: -

Identifier Source: org_study_id