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

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.

Study Overview

• Status: Completed
• Conditions: Dementia; Caregiver Burnout
• Intervention / Treatment: Behavioral: Savvy Caregiver Program via Remote Learning; Behavioral: Focus group

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.

• Study Type: Observational
• Enrollment (Actual): 10
• Phase: Not Applicable

Contacts and Locations

Study Locations

• United States
  • Georgia
    • Atlanta, Georgia, United States, 30322
      • Emory Goizueta Alzheimer's Disease Research Center (ADRC)

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

• Sampling Method: Non-Probability Sample

Study Population

Lesbian, gay, bisexual, transgender (LGBT) caregivers of person living with dementia (PLWD)

Description

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

Study Plan

How is the study designed?

Number of groups / cohorts

1

Cohorts and Interventions

Group / Cohort

Intervention / Treatment

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.

Behavioral: 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.; Other Names: Savvy Caregiver Program provided via Pre-Recorded Video; 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).

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Development of SCP for LGBT Caregivers of PLWD	A version of the SCP will be developed to meet the needs of LGBT Caregivers of PLWD through focus groups discussing the SCP after participants watch all of the videos. Semi-structured discussions in the focus group will include, but not be limited to the following questions: 1) Can you tell me about your role as a caregiver? 2) What did you like about 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? 5) What are some of the additional caregiver challenges that should be considered in these questionnaires?	Day of Focus Group (Day 1)

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Change in Caregiver Burden The Zarit Burden Interview score	The interview was developed to measure subjective burden among caregivers of adults with dementia. The 22-item self-report inventory examines burden associated with functional/behavioral impairments and the home care situation. The items are worded subjectively, focusing on the affective response of the caregiver. Scores range 0 - 88. Lower scores indicate little to no burden. Higher scores indicate greater burden. A score of 17 or more is considered high burden.	Baseline, 6-week follow up
Change in Caregiver Stress Perceived Stress Survey score	This questionnaire is comprised of 10 items from the Perceived Stress Scale. Scores range 0 - 40. Higher scores indicating higher perceived stress. A score of 0-13 would be considered low stress. Scores from 14-26 would be considered moderate stress. Scores from 27-40 indicate high perceived stress.	Baseline, 6-week follow up
Change in Caregiver Mastery Pearlin Caregiver Stress Scale score	Comprised of 6 domains from the full Pearlin Stress Scale. 1. Relational Deprivation: 6-24, higher scores indicate increased relational deprivation. 2. Role Captivity: 3 - 12, higher scores indicate an increased feeling of being trapped in the caregiver role. 3. Loss of Self: 2 - 8, higher scores indicate a greater loss of self. 4. Caregiving competence: 4 - 16, higher scores indicate greater caregiving competence. 5. Management of Situation: 4 - 16, higher scores indicate better management of the caregiving situation. 6. Management of Meaning: 9 - 36, higher scores indicate a better management of the meaning of the caregiving role.	Baseline, 6-week follow up
Change in Positive Aspects of Caregiving (PCOS) Scale score	Caregivers will be instructed that "In spite of all the difficulties involved in giving care to a family member with memory or health problems, good things can come out of caregiving experiences." The scale has 11 items, and overall scores range 0 - 44. Higher scores indicate a more positive view of the caregiving role while lower scores indicate less positive views of the caregiver role.	Baseline, 6-week follow up
Change in Care recipient quality of life DEMQOL: Dementia Quality of Life Measure (Carer v4) score	This 32 item questionnaire will be used to assess mood, cognitive status, and overall quality of life of the care recipient. Scores range 31 - 124. Lower scores indicate no subjective concerns about cognition or general health, while higher scores indicate a greater subjective concern about cognition and general health.	Baseline, 6-week follow up
Change in Behavioral and Psychological Symptoms of Dementia Revised Memory and Behavior Problem Checklist (RMBPC) score	This 24 item instrument measures the frequency of the care recipient's problem behaviors in the following domains: disruptive behavior (wandering, aggression), memory-related behavior (repeating questions and stories), and depression. Scores range 0 - 96 for frequency. Lower scores indicate little to no behavioral problems while higher scores indicate greater behavioral issues. Scores range 0 - 96 for reaction. Lower scores indicate little concern regarding the behavior on the part of the caregiver while higher scores indicate greater concern.	Baseline, 6-week follow up
Change in Family Quality of Life in Dementia Scale score	Yet unpublished survey is about how the caregiver feels their life together is as a "family". The family can include many different people. Scores range 41 - 205. Lower scores indicate poor quality of life as a family dealing with a loved one with dementia while higher scores indicate a higher quality of life as a family.	Baseline, 6-week follow up
Change in Nursing Skills Questionnaire score	Adapted from an AARP survey, this questionnaire assesses the likelihood of a caregiver to engage in nursing type skills with their care recipient. Scores range 0 - 34. Lower scores indicate the caregiver is less likely to complete nursing tasks with their care recipient while higher scores indicate the caregiver is more likely to complete nursing tasks.	Baseline, 6-week follow up

Collaborators and Investigators

• Sponsor: Emory University
• Collaborators: National Institute on Aging (NIA)

Study record dates

Study Major Dates

• Study Start (Actual): May 20, 2021
• Primary Completion (Actual): February 14, 2022
• Study Completion (Actual): February 14, 2022

Study Registration Dates

• First Submitted: May 15, 2020
• First Submitted That Met QC Criteria: May 15, 2020
• First Posted (Actual): May 19, 2020

Study Record Updates

• Last Update Posted (Estimate): March 10, 2023
• Last Update Submitted That Met QC Criteria: March 6, 2023
• Last Verified: March 1, 2023

More Information

Terms related to this study

• Keywords: Alzheimer's Disease (AD); Informal caregiver; Savvy Caregiving Program; Person Living with Dementia (PLWD); Lesbian, Gay, Bisexual, Transgender (LGBT); Alzheimer's Disease and Related Dementias (ADRD)
• Additional Relevant MeSH Terms: Behavioral Symptoms; Mental Disorders; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Neurocognitive Disorders; Stress, Psychological; Dementia; Caregiver Burden
• Other Study ID Numbers: STUDY00002246; 5P30AG064200-02 (U.S. NIH Grant/Contract); IRB00113264 (Other Identifier: Emory University)

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: YES
• IPD Plan Description: Individual participant data that underlies the results reported in this article, after deidentification (text, tables, figures, and appendices) will be shared
• IPD Sharing Time Frame: Immediately following publication with no end date
• IPD Sharing Access Criteria: Researchers who provide a methodologically sound proposal to achieve aims in the approved proposal will get access. Proposals should be directed to (w.wharton@emory.edu). To gain access, data requestors will need to sign a data access agreement. Data will then be shared directly via csv or excel file.
• IPD Sharing Supporting Information Type: ICF

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No