Barriers to post-diagnostic care and support in minority ethnic communities: A survey of Danish primary care dementia coordinators.

Abstract

BackgroundPeople from minority ethnic groups are under-represented in dementia diagnosis, treatment, and care. The aim of this study was to examine barriers to accessing post-diagnostic care and support in minority ethnic communities from the perspective of primary care dementia coordinators in Denmark.MethodA survey questionnaire investigating issues related to provision of care and support services in minority ethnic communities was conducted among 41 primary care dementia coordinators representing all Danish geographic regions. Responses were primarily based on five-point Likert scales. Results from geographic regions with different rates of people from minority ethnic communities with dementia were compared.ResultsAmong the surveyed dementia coordinators, 95% generally thought that providing dementia care and support services to minority ethnic service users was challenging. Strategies for overcoming cultural and linguistic barriers were generally sparse. Uptake of most post-diagnostic services was perceived to be influenced by service users’ minority ethnic background. Communication difficulties, poor knowledge about dementia among minority ethnic service users, inadequate cultural sensitivity of care workers, and a lack of suitable dementia services for minority ethnic communities were highlighted as some of the main barriers. Not surprisingly, 97% generally found minority ethnic families to be more involved in provision of personal care and support compared to ethnic Danish families.ConclusionThere is a need to develop methods and models for post-diagnostic care and support that include cultural awareness and diversity for interacting with different cultural communities.