2013 APPG report

Dementia does not discriminate: the experiences of black, Asian and minority ethnic communities

The issue

Dementia affects everyone in society, regardless of gender, ethnicity or socioeconomic status. These factors mean people experience dementia differently and the problems and challenges people and communities face are different.

The BAME population is defined as the population from all ethnic groups with the exception of White British. White Irish, Indian, Pakistani, Chinese and Black Caribbean are large ethnic minority communities amongst older people in the UK.

The number of people over 65 in the BAME community is increasing and with it the number of people with dementia. The areas of the UK with the highest BAME population are Greater London with significant Asian communities in the West Midlands and the North West, extending into West Yorkshire. Furthermore, whilst these are the larger older minority communities, the difficulties faced by smaller, less integrated communities are potentially more challenging still.

Current evidence in this area is limited, but it does indicate there might be lower awareness, higher levels of stigma, and different cultural understandings of dementia among people from BAME communities. Language and cultural differences may result in people presenting later to general dementia services than their White British counterparts, when their dementia has become more severe.

This inquiry brought together evidence and understanding about the experience of people with dementia from the BAME community. It looked at good practice examples where services have been tailored to people with dementia from BAME communities, so that these examples can be shared across the country.

In this work the APPG on Dementia sought evidence from a range of people. This included people with dementia and their carers, health and social care providers and practitioners, and experts in dealing with those issues that can face people living in different minority groups.

Process of the inquiry

Interviews were carried out with people with dementia and their families who live within BAME communities. Commissioners and providers of services were asked to submit case studies of services they have tailored to specific minority groups.

Oral evidence sessions were held in parliament where MPs and Peers heard from expert witnesses. These took place as follows:

  • Tuesday 19 March - where we heard evidence from a range of expert witnesses
  • Thursday 21 March - members heard further evidence and considered the recommendations that they wish to make

Hamid Rehman from Ethnos presented his findings from his interviews with people with dementia and their families who live within BAME communities.

A summary of the evidence along with recommendations for improvement was published in a report on 2nd July 2013.

View the full report.