Equality in Caregiving (EIC)
Intervention to Facilitate Caregiver Mastery Among LGB Caregivers of PLWD
What is Equality in Caregiving?
This is a clinical study to develop a caregiver training program to address the unique challenges faced by lesbian, gay, bisexual, and transgender informal caregivers of people living with dementia. Our goal is to improve caregiver mastery and mood, and reduce stress in LGBT caregivers of loved ones and friends with dementia.
If you are interested in being a participant in this study please give us a call at 404-712-2654.
You can also take a look at our flyer here.
Who is being studied?
To be eligible for this study, you must meet the following criteria:
Lesbian, gay, bisexual, or transgender
A primary caregiver for a person living with dementia (the definition of primary caregiver is variable)
18 years or older
Have normal memory and thinking abilities
Available to attend a 2 hour class in the evenings for six weeks (now via Zoom!), and a focus group
You may NOT be eligible if you meet these criteria:
Currently in another study with an intervention (social/behavioral, drug, or device)
Resident in a skilled nursing facility
Are pregnant or nursing
What is involved?
If you participate in this research you will involved in a six week caregiver mastery course that takes place once a week for two hours. At this time, due to COVID-19 we will be holding this class over Zoom to avoid large gatherings of people. In these classes you will be taught caregiving strategies, basics about the effects of progressive dementia on cognition, and how to focus on self-care. You will additionally, upon completion of the course, be a part of a focus group in order to let us know what can be improved in the course materials - especially with respects to the unique obstacles faced by the LGBT community. If you are located in Georgia you will also attend 2 clinic visits - one before beginning the course and one after - each will be about 30 minutes long. Procedures that will occur at these visits include:
Medical and health related questionnaires
Blood samples (if located in Georgia)
Basic assessment of vitals
This study is being conducted at three different Emory University locations:
Emory Alzheimer's Clinical Research Unit (ACRU)
6 Executive Park Dr, 2nd floor
Atlanta, GA 30329
Emory Brain Health Center
12 Executive Park Dr, 5th floor, Green Side
Atlanta, GA 30329
Emory Nell Hodgson Woodruff School of Nursing
1520 Clifton Rd
Atlanta, GA 30322
This grant was funded by the National Institute on Aging (NIA), a division of the National Institute of Health (NIH), in 2019. It is a pilot study under the Emory Roybal Center for Dementia Caregiving Mastery.
Why is this research important?
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 (inflammatory markers, CRP and cortisol) 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, 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 LGB 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).