All-Party Parliamentary Group on Dementia

All-Party Parliamentary Group on Dementia Services and support for people living with dementia in the UK within minority ethnic groups

2013 Inquiry

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 will bring together evidence and understanding about the experience of people with dementia from the BAME community. It will also find 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 is seeking evidence from a range of people. This will include 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 will be carried out with people with dementia and their families who live within BAME communities. Commissioners and providers of services will be asked to submit case studies of services they have tailored to specific minority groups. The deadline is Friday 1 March.

Following this oral evidence sessions will also be held in parliament where the MPs and Peers will hear from expert witnesses.

A summary of the evidence along with recommendations for improvement will be published in a report in Summer 2013.

For more information about this work please email appg@alzheimers.org.uk  or call 020 7423 3585/ 5186.

How you can get involved

If you have experience of providing or commissioning a service that has been tailored for a BAME community, please fill in the online form and share your experience. The deadline is Friday 1 March.

You can also register your interest in this work if would like to be kept up to date with its progress, and receive an invitation to observe the oral evidence sessions in March 2013.