Caretaking is no easy feat; it’s an emotionally and physically taxing responsibility that requires help and support. However, for many LGBTQ caregivers, inclusive support can be difficult to find. Many existing courses and resources for caregivers of Alzheimer’s patients aren’t tailored to the specific needs and experiences of the LGBTQ community. That’s why Dr. Whitney Wharton, a clinical investigator and cognitive neuroscientist at Emory University, is developing a course made specifically for LGBTQ caregivers in the Atlanta area. Inspired by her own experience seeking support as a caretaker, Dr. Wharton hopes to inspire confidence in LGBTQ caregivers while addressing the possible shortcomings that exist in the world of Alzheimer’s prevention research.

“I am a caregiver for a cancer patient, so I am familiar with the role. I was looking at an existing program for my work with dementia that I thought was was helpful, but I didn’t necessarily see myself in,” Dr. Wharton, told Georgia Voice. “Some of the language and examples used weren’t representative of an LGBTQ person’s interaction with a person with dementia.”

Dr. Wharton has dedicated the last decade of her life to research focusing on individuals who are underrepresented in the realm of dementia caregiving, including African Americans and the LGBTQ community. The latest of this research is an educational intervention course, titles “Equality in Caregiving.” The six-week course will provide LGBTQ primary caregivers with useful tools to manage the day-to-day life of caretaking, while connecting them with resources relevant to their own personal needs.

The course is a modification of the Savvy Caregiver Program —  an existing educational intervention that has been proven to be effective for dementia caregivers — to be more applicable to the LGBTQ community. It is being developed with the help of a community advisory board, which includes leaders of ZAMI NOBLA, AARP, and the Alzheimer’s Association. It will cover four central tenets:

  • Managing daily life. Participants will learn how to help a person with dementia have days that are as calm, safe, and pleasant as possible.

 

  • Managing specific situations. Participants will learn how to understand and guide the behaviors of the dementia patient that are concerning and possibly troublesome. They will gain tools and skills to avoid and redirect this behavior to prevent distress.

 

  • Managing own well-being. Participants will be given tools to examine their feelings concerning caregiving, stress, and triggers so they can better manage their own self-care.

 

  • Managing resources. Participants will be connected with two types of resources: generalized organizations and resources pertaining to Alzheimer’s and the LGBTQ community, and personalized institutions, like religious services, legal assistance, and hospice assistance, that are determined by the caretaker’s personal needs.

“It’s a structured and interactive program,” Dr. Wharton said. “We’ll give education about dementia, caregiving, symptoms of the disease, and ways to cope in this new COVID world … We’re just giving the information, we’re not pushing any sort of facility, company, or resource. We’re just letting people know what’s out there in hopes they find something that works for them in their personal situation while tailoring the information to the LGBTQ community.”

Currently, Dr. Wharton and the other researchers are planning participation restricted to those in Georgia, “so we can provide region-specific resources,” but once it is fully developed, the course will be made available in other cities, free of charge.

The course is currently in developmental research stages, and participants are needed. To qualify, you must be LGBTQ, 18 or older, and the caregiver of a person with dementia. You must also have normal memory and thinking abilities. Participants will be compensated $150. Requirements of participants include a medical history and health questionnaire, one 90-minute focus group, and attendance at the six weekly Zoom calls, which will be held in the evenings and last approximately one and a half hours.

“I hope participants come out of this class with a sense of confidence regarding caregiver mastery. To me, that means being more confident in how to manage those four tenets,” Dr. Wharton said. “For us [as researchers], I hope we can understand the gaps where resources aren’t available.”

“It can be hard [for caretakers] to identify helpful resources, and [helping guide them] is something I’m very personally passionate about,” Dr. Wharton continued. “I want to use my research platform to be able to
help others.”

If you’re interested in taking the course or want to learn more, you can contact the research team at 404-712-2654 or email Dr. Wharton at w.wharton@emory.edu.

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