Barriers and facilitators to accessing support for people affected by rare dementias who are from culturally, ethnically and linguistically diverse backgrounds.

Abstract

Background: It can take several years for people with rare dementias to receive a diagnosis. People from non-White and linguistically diverse backgrounds are also often diagnosed with dementia later than their White, English-speaking counter parts. These factors are likely to delay access to support for people who have rare dementias and who are from diverse backgrounds. This study aimed to investigate facilitators and barriers to people with rare dementia diagnoses who are from culturally, ethnically and linguistically diverse backgrounds in accessing appropriate diagnostic and post-diagnostic support services.

Methods: Purposive sampling was used to recruit 10 people affected by a diagnosis of rare dementia who were from culturally, linguistically and/or ethnically diverse backgrounds. Semi-structured interviews explored experiences and perspectives in accessing care and post-diagnostic support. Reflexive thematic analysis was used to extract key themes.

Results: Six themes were identified: (1) There is a lack of awareness amongst cultures perpetuated by intersectionality, (2) Carers experience tensions, (3) No society deals well with dementia, (4) Culture, language and ethnicity is a barrier in both directions, (5) Language as a barrier: languages spoken and language(s) lost, (6) What service providers need to do.

Discussion: This study identified a lack of awareness of dementia within cultures as well as the wider community that was exacerbated by additional issues such as geographic, financial and gender disparities. Clinical care recommendations synthesised from the study results highlight a need to increase awareness of rare dementias within culturally diverse communities, as well as improving cultural competence within health and social care staff.