Abstract
ABSTRACTIntroductionPeople from minoritized ethnic groups are diagnosed with dementia later in the disease. We explored pathways that may determine the timing of diagnoses in an ethnically diverse, urban area.MethodsWe conducted 61 semi-structured interviews: 10 community-dwelling older people from minoritized ethnic backgrounds with diagnosed and undiagnosed dementia (mean age = 72 years; males = 5/10), 30 family members (51, 10/30), 16 health or social care professionals (42; 3/15) three paid carers and two interpreters for people with dementia. We used reflexive thematic analysis, and the Model of Pathways to Treatment to consider diagnostic delay.FindingsWe identified three themes: (1)Cultural identity and practices shape responses: gendered expectations that families relieve elders of household roles reduce awareness or concern when functioning declines; expectations that religious practices are maintained mean problems doing so triggers help-seeking. Second generation family members often held insider and outsider identities, balancing traditional and Western perspectives. (2)Becoming like a tourist:daily experiences became unfamiliar for people developing dementia in an adopted country, sometimes engendering a need to reconnect with a home country. For professionals and interpreters, translating meanings faithfully, and balancing relatives’ and clients’ voices, were challenging. (3)Naming and conceptualising dementia:the term dementia was stigmatised, with cultural nuances in how it was understood; initial presentations often included physical symptoms with cognitive concerns.ConclusionGreater understanding of dilemmas faced by minoritized ethnic communities, closer collaboration with interpreters and workforce diversity could reduce time from symptom appraisal to diagnosis, and support culturally competent diagnostic assessments.
Publisher
Cold Spring Harbor Laboratory