Taking care of and participating in research focused on patients with Alzheimer's disease ( a form of dementia ) has been a part of Indiana University ( IU ) Center for Aging Research at Regenstrief Institute Research Scientist and IU School of Medicine Associate Professor of Medicine's Dr. Alexia Torke's life since her undergraduate years at Minnesota's Carleton College.
"As an undergraduate, I helped with research on persons with dementia in the nursing home, "said Torke. "When I came back to my hometown of Indianapolis after college, I got a job as a research assistant and worked on a study about the cognitive changes of dementia."
Now Torke—who specialized in internal medicine during her residency at Emory University and currently practices the new field of outpatient palliative care at IU Health Methodist Hospital—is taking her interest in the well-being of patients with Alzheimer's a step further with a new grant from the National Institutes of Health. The grant money will be used to study how LGBT older adults with Alzheimer's caregivers ( surrogate decision-makers ) are coping with this responsibility.
"Throughout my 15 year research career, I have been drawn to the really hard situations where family members and clinicians have to make decisions for someone who cannot make them by themselves," said Torke. "That is hard in any case but when the patient or caregiver is part of the LGBT community there are other challenges that include prior bad experiences with the healthcare system including overt and covert discrimination that has led to a lack of trust in these institutions.
"LGBT people with dementia are less likely to have a caregiver spouse or adult children and have to rely on a chosen family member to make these decisions. As a lesbian, I think it is really important to focus on the special needs and vulnerabilities LGBT older adults with Alzheimer's and their caregivers face as they interact with the healthcare system."
The main thing that has deepened Torke's understanding of the challenges LGBT patients face, including the lack of knowledge or prejudice from some clinicians, is her own experience in seeking healthcare for herself, her spouse Martha Egger and their two teenaged sons.
Torke said the grant covers doing interviews in two locations: Indianapolis and Denver. She is collaborating with University of Colorado School of Medicine General Internal Medicine Division Assistant Professor Carey Candrian, Ph.D., to conduct the caregiver surveys in Denver while she will be doing them in Indianapolis. Candrian is an ethnographer and her graduate training focused on interaction as a site of inequality due to the way people talk to each other and whether they reveal their true selves to others.
Candrian said she, like Torke, has been interested in improving health equity and reducing disparities among LGBT older adults for years. This includes creating a volunteer program for advance care planning focused on the LGBT community in Denver.
"We are using a combination of methods, including working closely with local LGBT advocacy groups, support groups and clinicians in our clinics in Colorado caring for older LGBT adults to choose our interview participants," said Candrian.
In terms of the questions they will be asking, Candrian said, "The interview guide is divided into different domains around their caregiver experience, information received and how emotional support, their role as a surrogate decision maker and their engagement with advance care planning. The majority of them are open-ended to really give people the opportunity to share their experience.
"Ultimately, we hope to improve this surrogate decision-making process for people caring for older LGBT adults with Alzheimer's or related dementias from the people actually involved in this process. We want their voices and experiences to guide us all into improving the overall care experience for LGBT people."
Candrian said there is almost no literature on surrogate experience in the LGBT community and that is why the project is so important to her. The icing on the cake for Candrian is being mentored by Torke through this process because of their shared interest in the topic combined with both Torke's clinical and her non-clinical approach to this study.
Torke told Windy City Times that the findings will be published in scientific journals and be made available in layman's terms on the web so caregivers can access this resource as they navigate the healthcare system going forward.
"I want every LGBT person to think about who you want to make healthcare and financial decisions for yourself if you are unable to do so down the line no matter your family circumstances and get the legal documents in order for that to happen," Torke said.
