EQUALITY IN CAREGIVING (EIC)

Facilitating Caregiver Mastery Among LGBT 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 or email us at klikos@emory.edu.

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

  • Be 18 years or older

  • Consider yourself to be a primary caregiver for another adult (for at least three months) OR

  • Consider yourself to have formerly been a primary caregiver for another adult (for at least six months no more than five years ago)

  • Have normal memory and thinking abilities

You may NOT be eligible if you meet these criteria:

  • Any significant diagnosed illness or unstable diagnosed medical condition that could affect cognition and cause difficulty participating in the study 

What is involved?

 

​If you participate in this research, you will be asked to fill out surveys about your experiences as a caregiver. The researchers will ask you to watch four pre-recorded instructional videos teaching a caregiver mastery program that focuses on caregiving strategies, basics about the effects of progressive dementia on cognition, and how to focus on self-care.

After each video,  you will be asked to complete 15-minute discussion questionnaires after each video. After you have finished all of the videos and discussion questions, you will participate in a two hour virtual focus group about the program 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. .

Procedures for this study include:

  • Medical and health related questionnaires

  • Caregiving and Health Questionnaires (for all LGBT caregivers)

  • Four online instructional videos for caregiver mastery (for dementia caregivers only)

  • Fifteen minute discussion questionnaires after each instructional video (dementia caregivers only)

  • Two hour focus group (via Zoom, for dementia caregivers)

How do I get involved?

 

This study will take place virtually.

All  questionnaires will be filled out online on a survey platform. You will have one week to work through each video and question set at your own pace. All focus groups will take place over Zoom with the study team.

You can start the Equality in Caregiving surveys by clicking the button below.

Project Funding

 

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).