A systematic review of ethnicity and pathways to care in dementia

Abstract

To explore why people from minority ethnic (ME) groups with dementia present later to specialist diagnostic and therapeutic dementia services. We systematically reviewed the literature exploring how and why ME people with dementia present to specialist services. We included qualitative and quantitative studies that explored pathways to dementia specialist care in ME groups or determinants of whether ME people with dementia accessed specialist services. Included studies were independently evaluated for quality by two authors. We found 3 quantitative and 10 qualitative papers meeting our inclusion criteria. Barriers to accessing specialist help for dementia included: not conceptualizing dementia as an illness; believing dementia was a normal consequence of ageing; thinking dementia had spiritual, psychological, physical health or social causes; feeling that caring for the person with dementia was a personal or family responsibility; experiences of shame and stigma within the community; believing there was nothing that could be done to help; and negative experiences of healthcare services. Recognition of dementia as an illness and knowledge about dementia facilitated accessing help. There are significant barriers to help seeking for dementia in ME groups. These may explain why people from ME groups often presented to therapeutic and diagnostic services at a late stage in their illness. Further study is needed to elucidate the role that ethnicity and culture play in the help-seeking pathway for dementia, and to design and test interventions to improve equity of access to healthcare services.