Understanding the needs and experiences of surrogate decision makers caring for SGM individuals with Alzheimer's Disease and Related Dementias.

Indiana University Indianapolis, Indianapolis IN

Investigators

Linked publications, trials & patents

Abstract

ABSTRACT Facing Alzheimer?s Disease and Related Dementia (ADRD) in a loved one is challenging under any circumstances, but may be even more challenging when the patient or their decision maker is a sexual or gender minority (SGM). While SGM individuals have become a more visible part of society, there is accumulating evidence of health disparities among SGM older adults. Although Dr. Alexia Torke?s K24 proposal has provided support for secondary analysis of data addressing the emotional, spiritual and religious aspects of surrogate decision making, this dataset is not large enough to include the number of SGM participants needed to conduct rigorous research on the experience of this vulnerable population. Given the risk of ADRD in the aging population, further primary data collection is needed to understand the perspectives of surrogates caring for SGM patients with ADRD, in order to develop interventions that improve the quality of decisions and the surrogate?s experience. Specific aims of this supplement proposal are to understand the needs and experiences of surrogate decision makers caring for SGM individuals with Alzheimer?s Disease and Related Dementias and to develop and pilot test a survey assessing SGM individuals? understanding of and engagement in the surrogate decision making process. We will first qualitatively interview 25-30 surrogate decision makers who have recently cared for SGM individuals or currently caring for SGM individuals with Alzheimer?s Disease and Related Dementias. We will purposefully sample a mix of individuals where the surrogate is a SGM or not but caring for a SGM individual. We will then develop a survey based on findings in Aim 1 regarding the needs and challenges of surrogate decision making. Refine the survey using cognitive interviewing with a small sample of 25 SGM older adults. Results of this study will be used to 1) validate the survey to asses understanding of and engagement in the surrogate decision making process for SGM patients, 2) inform the development of an intervention designed to increase the quality and quantity of engagement with advance care planning among SGM communities, and 3) better prepare surrogates caring for SGM people. This supplement will further the aims of Dr. Torke?s original K24 proposal, to mentor the next generation of surrogate decision making researchers and to further understand the mechanisms of surrogate decision making. Dr. Torke will mentor Dr. Carey Candrian, a researcher who has conducted studies in advance care planning in the SGM community.