Exploring the lived experience of the individual of Black ethnicity living with dementia: A phenomenological study

the United Kingdom(UK), Black and Minority Ethnic(BME) groups are more at risk of developing Vascular Dementia and experience a higher rate of younger-onset dementia (≤ 65 years), compared with the majority ethnic White British population. Despite this, BME people living with dementia in the UK, are under-represented in health services. They receive a diagnosis later in their disease progression and are less likely to access dementia services. There is a growing body of work in the UK exploring dementia experiences within Asian communities. However, there is limited research, considering the experiences of individuals of Black ethnicity living with dementia in the UK. This study aimed to explore the lived experience of dementia focusing on individuals of Black ethnicity living in four North East London Boroughs. The investigation sought to provide an understanding of what constitutes ‘living with dementia as a person of Black ethnicity’; and presents an interpretation of this. Interpretive phenomenology based on the work of Heidegger (1927) was used to explore the experiences of six participants. Data was collected through a series of three semi-structured interviews with each participant, audio recorded and transcribed verbatim. Thematic data analysis was conducted, using a framework by Braun and Clarke (2006). A phenomenological interpretation identified three overarching themes: Life before Dementia, Journey to Diagnosis and Living with Dementia. The role of God and Religion was significant throughout the different stages of life and influenced the decision-making process to access health services. In totality, the themes represent the lived experience of living with dementia for the individuals of Black ethnicity who participated in this study. Through exploring the lived experience of dementia, this study provides some insight into the barriers to dementia service uptake in this population and their understandings of dementia.