In 2014, IPA advanced the field of Alzheimer’s care by offering a definition of agitation. Yet, as the definition rightly notes, agitation “can bear very different meanings to different people.” This becomes more complex as we consider how different cultural and socioeconomic communities talk about agitation – both within their communities and outside them.

“Articulating Agitation: Towards Culturally Competent Care” seeks to better understand how people living with dementia (PLWD) and care partners talk about agitation from a multi-cultural perspective. This project focuses on discussions of agitation within Black, LGBTQ+, and white American populations.

This project prioritizes the first-hand testimony of people with lived experience, both PLWD and care partners. We conducted a series of interviews with members from Black, LGBTQ+, and white communities in 2021 and 2022 to gain authentic testimony. Interviews were led by members of the respective communities, with our research team on “listen only” mode.

There are notable differences in how each community talks about agitation – including identifying early symptoms; conversations with families, communities, and HCPs; and determining pathways for care and treatment. From our conversations with members of the Black community we heard statements like, “what goes on in the house stays in the house, we don’t discuss [dementia] with other people” and “our people don’t trust a lot of stuff being put out there by doctors and scientists”. From the LGBTQ+ community we heard statements like “I definitely felt that we weren’t taken as seriously or heard because we were two women”. All underscore the sweeping implications of history, stigma, bias, and culture on how diverse communities experience and respond to agitation and care.

Culturally competent care for agitation among PLWD and care partners requires HCPs and other supporters to balance two things at once: the standard diagnostic definition of agitation, but also the cultural humility and openness to listen and seek to understand how PLWD and care partners express their experiences and observations with agitation.