Pathways to the diagnosis of Alzheimer’s Disease and other related diseases: The perceptions of racially diverse caregivers

Abstract

Background: Increasing evidence suggests that early diagnosis of Alzheimer’s disease and related diseases (ADRD) offers opportunities for access to supportive services and disease management. However, most cases of ADRD are diagnosed in the later stages of the disease limiting the benefits of supportive services and increasing challenges related to the disease. This study aimed to understand facilitators and barriers to early ADRD diagnosis among Black and White individuals seeking racial differences in this process. Methods: Our sample included 21 racially diverse caregivers (n= 21) of older adults with ADRD, including Black caregivers (n=11) and White caregivers (n= 10). Semi-structured interviews were conducted individually with participants. Duke University Health System (DUHS). Data were coded for emerging themes and analyzed through the lens of the life course framework using NVIVO analysis software. Results: Facilitators and barriers along the diagnosis process were shaped by the individual, family/caregiver, and interactions with the healthcare system. Racial differences were particularly evident regarding family/caregiver's lower knowledge about ADRD, care approach offered to the care recipient, and prevalent negative interactions with the healthcare system among Black caregivers. Conclusions: The diagnosis process pathways were lengthy, characterized by caregivers' persistence, challenges to receiving an adequate cognitive assessment, and limited access to supportive services. Black caregivers experienced a more prolonged process, lower knowledge about ADRD, and challenging interactions with the healthcare system.