Experiences of black and minority ethnic people living with dementia in receipt of direct payments

Abstract

Black and Minority Ethnic (BME) people with dementia have been shown to face various challenges when accessing health and social care services (Andrew, 2015; Moriarty, Sharif and Robinson, 2011; Ogliari et al., 2020; Wilson et al., 2020). The number of BME people with dementia in Scotland is increasing in line with the wider population. This research aimed to explore if Direct Payment (DP), one method of delivering support under the Social Care (Self Directed Support) (Scotland) Act 2013, is effective and culturally sensitive in meeting their needs. Qualitative research methods were used based on interviews with 39 participants: four people with dementia, 10 carers, 12 practitioners and 13 stakeholders. Social constructionism provided a framework for understanding how their knowledge is shaped by the culture and context of society (Kukla, 2000; Prawat and Floden, 1994); narrative methodology was used to show how they construct meaning from their experiences. The research findings revealed multi-faceted and intersecting structural, contextual, cultural and individual factors that make it challenging for BME people with dementia to access health and social care services. While BME people, in general, may face similar challenges with the wider population, they are further compounded by racism, discrimination, a lack of culturally appropriate services and language barriers, leading to increased marginalisation and isolation, which then intersect with dementia. The SDS legislation appears to be progressive with good intentions. However, due to complex DP processes and limited funding, the extent to which DP offers personalised support to BME people with dementia is contextual; it was found to depend on individual needs, service availability and budget sufficiency. Whilst DP had a positive outcome for some BME people with dementia, extending this will require better working together by all involved. This research has contributed and extended knowledge on exploring intersecting factors of race, gender, class, inequalities and dementia that affect BME people with dementia. It adds to the research on dementia using storytelling to collect data engagingly with BME people with dementia. The knowledge and insights gained will inform academic, practice, and policies on the needs of BME people with dementia on planning, delivery, and evaluation of DP for BME people.