"Those Gray Areas of Healthcare": Primary Care Perspectives of Obstacles that Influence Decision Making with Families of African American Persons Living with Dementia.

Abstract

African American persons living with Alzheimer's disease and related dementias (ADRD) experience health disparities in health care decision making. This study's objective is to understand what influences health care decision making for African American persons living with ADRD from the perspectives of primary care providers and care team members. Twenty primary care providers and care team members completed semi-structured interviews to identify barriers associated with their involvement in health care decision making for African American persons living with ADRD. The interviews were analyzed with directed content analysis. Three themes were identified: Systemic Healthcare Obstacles; Relational Healthcare Obstacles; and Individual Health Care Obstacles. The themes diverged to yield 9 categories (Inability to See/Hesitancy to Address Racism; Care Coordination at End of Life; Perceived Lack of Trust; Inadequate Answers and Connections; Uncertainty with Decision Making; Racial and Ethnic Identity; Lived Experiences; Definition of a Good Decision; and Hurt Feelings) and 2 subcategories (Cultural Miscommunication and Time to Build Mutual Understanding). To effectively support decision making processes for African American persons living with ADRD, there is a need to equip primary care providers and care team members with means to identify and address obstacles at multiple levels.