Nutrition & Hydration in Dementia: An Exploration of Culture in Black and Minority Ethnic groups

Over 850,000 people in the UK have dementia, with an estimated 25,000 from ethnic minority groups. These include people born overseas, growing old with dementia away from ‘home’. Despite this, relatively few studies have explored their experiences, particularly around food and drink, and implications for community-based dementia care practices. This study aims to: 1) explore with family carers and people with dementia how best to manage eating/drinking for someone with dementia from black and minority ethnic groups (BME); 2) explore the social/cultural context of eating/drinking in dementia in BME groups.

This study consists of two phases. The first phase focuses on experiences related to food and drink in advanced dementia. People with dementia may have problems with eating and drinking, which may become more challenging in the later stages, and carers have reported difficulties with managing this at home. We want to understand how families/carers from different cultural backgrounds manage food and drink for someone with dementia in home contexts towards the end-of-life, how cultural backgrounds/beliefs affect attitudes/preferences, as well as consider how support for carers and people with dementia might be modified for different cultural contexts. We will interview carers of people with advanced dementia and people with mild dementia from Afro-Caribbean and South Asian backgrounds about their views and experiences. The second phase aims to build on phase one to explore in more depth the social and cultural aspects of food/drink in dementia in these groups. We will undertake a period of observation in a Day Centre and in home settings in order to explore daily experiences around food and drink, as well as interview older adults with dementia and carers from Afro-Caribbean and South Asian backgrounds. Findings will help inform better approaches to the management of nutrition/hydration for people with dementia and family carers from BME groups.