P46: Language + Lexicon: Unique Perspectives on the Stigma Surrounding Alzheimer’s Disease from the Latino Community

Abstract

Objectives: To better understand the unique experience and stigma surrounding Alzheimer’s disease and related neuropsychiatric symptoms. Particularly from the perspective of care partners and individuals living with the disease who are members of the Latino community.

Methods: This project captures stories from individuals representing Latino communities based in the United States. Our qualitative primary research consisted of multiple one-on-one interviews with more than 12 people living with dementia and care partners. Secondary research included a literature review on the community’s experiences. Interviews were led by a member of the Latino community, with our research team on “listen only” mode.

Results: There are notable differences in how communities talk about Alzheimer’s – including identifying early symptoms; conversations with families, communities, and HCPs; and determining pathways for care and treatment. From our conversations with members of the Latino community we heard statements like, “I did not want to tell anybody about my diagnosis. I felt I would be looked upon in a negative way” and “I didn’t know anything about Alzheimer’s. My uncles and aunts from the ranch and ‘said no, no, it doesn’t exist, it’s all in the mind or something like that.” All underscore the sweeping implications of history, stigma, bias, and culture on how diverse communities experience and respond to Alzheimer’s and care. The resulting impact of these perspectives can lead to delayed diagnosis, reluctance to seek treatment, and a lack of a support system for care partners. However, we also heard stories of how individuals are using their unique experiences to educate those around them. For instance, we heard the importance of educating younger family members to break the cycle of stigma; “In the Latino community, households are often multigenerational, so it’s important to educate kids on what’s happening to grandma or grandpa, or even mom or dad.”

Conclusions: It is imperative to understand and bring attention to the realities of diverse and underserved communities who disproportionately experience stigma and discrimination. This will allow for a more nuanced, community centered approach to raise awareness of Alzheimer’s and the related symptoms, ultimately improving access to care and treatment for families.