A novel intervention to improve care for older sexual and gender minority (SGM) adults with serious illness and especially those with Alzheimer’s Disease and Related Dementias (ADRD)

Project Summary/Abstract: Collecting representative and inclusive data about sexual
orientation and gender identity (SOGI) is a critical component of combating the devastating
health disparities affecting sexual and gender minority (SGM) older adults. This is particularly
crucial for patients living with ADRD, which is widely regarded as a family disease requiring the
active caregiver involvement, particularly with advanced disease. Failure to collect and integrate
SOGI data to identify patients’ informal support systems may have adverse health
consequences for SGM older adults, particularly for those dependent on informal caregivers to
provide in-home support and assist with activities of daily living. Improper identification of
chosen family and caregivers contributes to incomplete care delivery and disenfranchised grief.
Given the historical discrimination experienced by older SGM people, adding SOGI questions
without proper training has the potential to harm patients and create staff discomfort rather than
foster inclusive interactions. For this career development award, I propose to characterize SOGI
data collection challenges from patients and caregivers enrolling in hospice while exploring
understudied intersections, such as SGM people living with ADRD, and how they affect staff
approaches to delivering person-centered care. These insights will be used to develop and pilot
test an intervention to train hospice interdisciplinary team (IDT) staff to sensitively collect and
utilize SOGI data to improve communication with SGM patients and caregivers. Candidate,
Mentors and Proposed Training: I am an Assistant Professor at the University of Colorado
School of Medicine. My long-term goal is to become a leader in communication aging research
to reduce health disparities by affecting change for SGM older adults via more effective, personcentered communication. This work will harness my background as a communication health
researcher, my previous research with hospices and older SGM communities including those
living with ADRD, and my lived experience as a SGM person. Research Plan: My research aims
to: 1) characterize barriers and facilitators to communicating with SGM patients and caregivers
who have a serious illness, with a special emphasis on those with ADRD; 2) develop an
educational intervention for hospice IDT members to improve communication with older SGM
patients; and 3) pilot test a novel communication training intervention for feasibility and
acceptability of behavior change to engage in meaningful dialogue. My training goals include
developing additional expertise in: 1) statistical methods for testing hypotheses and evaluating
clinical trial interventions; 2) community-based stakeholder engagement and bioethical
intervention development; and 3) clinical trials and intervention development and evaluation.
This K01 is critical to my becoming an independent leader in SGM aging research. Implication:
This project will not only inform how to improve SOGI data collection but will contribute to
communication behavior change to facilitate meaningful dialogue with SGM older adults,
including those with ADRD, and their caregivers around the end of life.

Grant Number: 5K01AG075141-04
NIH Institute/Center: NIH
Principal Investigator: Carey Candrian