Black and minority ethnic (BME) communities and dementia
More than 40,000 older black and minority ethnic (BME) people live with dementia in the UK (1), in part due to vascular risk factors such as hypertension often found in African-Caribbean and South Asian UK populations. In other ethnic groups such as Irish and Jewish, there is a demographically-older population so with the link between age and dementia, prevalence is likely to be higher. What additional awareness do those working in social care need to have to meet the particular needs of these older people?
For some people, the experience of what it means to live with dementia will be unfamiliar. They may not have seen or cared for someone with dementia in their family if they left their country of origin for work when young, for example. Knowledge of dementia and dementia services is limited in other BME groups (2). For example, in one Chinese community, negative perceptions of dementia resulted from poorly-translated terms which give dementia the meaning of ‘lost intelligence disease’. A perceived or actual cultural bias in assessment tests and diagnosis may limit their value or appropriateness for some BME older people (3).
Engagement with social and health care services may be resisted by some BME communities because they fear discrimination or they find services are difficult to access. Chinese older people said they feared a relative in care would be the only person from that community and thus be isolated. A delay in seeking support may mean the person is not in contact with services until disease is advanced or the person or family is in ‘crisis’.
There is evidence that minority ethnic carers are more likely to be isolated from mainstream services. Some may view using a service as a source of shame (4). In Islam, Hinduism and Sikhism the duty of care is apparent or is regarded as a ‘test from God’ (4). There is stigma around dementia is some cultures; it may be regarded as a punishment for past misdemeanours or a family member with dementia may damage the marriage prospects of a young relative.
There’s evidence that people from BME communities are not sure where or how to find information about dementia. This is exacerbated by language barriers or when people have lost cognitive skills, or if online information is not available in community languages. People may confuse the symptoms of dementia with ‘normal ageing’ and not seek the support that is available. That is why access to sector organisations which can support navigation of the system is so important.
Community navigators can support staff who lack specific cultural knowledge as well as individuals and families from that community. Establishing links with culturally-appropriate voluntary and community groups as well as interpreters who can support communication with families will provide the opportunity to discuss diagnosis and treatment options. There are examples of good practice in dementia care for those from BME communities but expertise needs to be shared more widely across the provider sectors (5).
- Simpson, L (2013) What makes ethnic group populations grow? Age Structures and Immigration, ESRC Centre of Dynamics of Ethnicity (CoDE).
- Moriarty, J, Sharif N and Robinson J (2011) Black and Minority Ethnic People with Dementia and their Access to Support and Services, SCIE
- Jolley D et al ‘The @Twice a child’ project: Learning about dementia and related disorders within the black and minority population of an English city
- Rauf, A (2011) Caring for Dementia: Exploring good practice on supporting South Asian carers, Bradford Metropolitan District Council.
- Race Against Dementia Alliance. (2015). Race against dementia: a call to action: good practice guidance. London:
Further reading Open
Dementia, equity and rights
Age UK et al. (2016).
Coventry: National Care Forum.
Highlights the main issues arising for people with dementia and carers from a variety of population groups. These include: the oldest old, young onset, people with disabilities, black and minority ethnic people (BME), women, lesbian, gay, bisexual and transgender people (LGB&T), and different socio-economic populations.
Dementia in black and minority ethnic communities: meeting the challenge
Findings from a one-day learning event from Age UK and the Race Equality Foundation, Birmingham, 27 November 2013.
Age UK Race Equality Foundation. (2013). London: Race Equality Foundation.
Although the number of people with dementia in black and minority ethnic communities in the UK is increasing, research on this subject is limited. This report outlines the learning from a one-day learning event, run jointly by the Race Equality Foundation and Age UK.
Dementia does not discriminate: the experiences of black, Asian and minority ethnic communities
All-Party Parliamentary Group On Dementia. (2013). London: All-Party Parliamentary Group on Dementia.
This inquiry report from the All-Party Parliamentary Group on Dementia brings together evidence and understanding about the experience of people with dementia from the black, Asian and minority ethnic (BAME) community.
Race against dementia: a call to action: good practice guidance
Race Against Dementia Alliance. (2015). London: The Race Against Dementia Alliance.
Paper listing activities, actions and examples of good practice for working with black, Asian and minority ethnic (BAME) people, families, communities and organisations affected by dementia.
The race against dementia: a call to action
Race Against Dementia Alliance. (2016).
A paper from the Race Against Dementia Alliance which aims to promote improved understanding of dementia in Black, Asian and minority ethnic (BAME) communities.
Dementia and diversity: a guide for leaders and managers
Skills for Care. (2016). Leeds: Skills for Care.
A practical resource developed to help leaders and managers to support and develop their teams working with people living with dementia who are from a diverse range of cultures and backgrounds. The resource focuses specifically on supporting staff working with: people with dementia who are from a black, Asian or minority ethnic background (BAME); people with dementia who are lesbian, gay, bisexual or transgender (LGBT); and people with young-onset dementia.
Black, Asian and minority ethnic communities and dementia: where are we now?
Truswell David. (2013). London: Race Equality Foundation.
This briefing looks at developments in the UK since the launch of the National Dementia Strategy in 2009. It considers the extent to which the strategy is addressing the information, support and care needs of those in black and minority ethnic communities and ensuring that they are supported in 'living well’ with dementia.
Dementia services in Tower Hamlets
This video focuses on the challenges for people with dementia from some black and minority ethnic communities, and the work that has been done in Tower Hamlets to increase diagnosis rates for these groups and provide appropriate post-diagnostic support.
Race and dementia
Runnymede Trust (2013).
The film explores the double discrimination and how the current system fails to address the unique issues faced by BAME people with dementia.
Additional material (no free full text available) Open
Dementia, culture and ethnicity: issues for all.
London: Jessica Kingsley (2015)
With contributions from experienced dementia practitioners and care researchers, this book examines the impact of culture and ethnicity on the experience of dementia and on the provision of support and services, both in general terms and in relation to specific minority ethnic communities. Drawing together evidence-based research and expert practitioners' experiences, the book highlights the ways that dementia care services will need to develop in order to ensure that provision is culturally appropriate for an increasingly diverse older population.
Dementia has now boundaries
Dawood Mary. (2015). Diversity and Equality in Health and Care, 12(2), 81–82.
One of the defining features of some dementias is the progressive loss of short-term memory and sense of place whilst long-term memory remains intact. For black and minority ethnic people (BME) there is a strong likelihood of dementia and short-term memory loss with the added complications of language and culture.
Ethnicity and cultural diversity in dementia care: a review of research
Jutlla Karen. (2013). Journal of Dementia Care, 21(2), 33-39.
This review identifies research which could offer insights into the challenges and experiences of people living with dementia and their family carers from black and minority ethnic (BME) communities.
An electronic resource handbook for CNWL memory services: dementia information for Black, Asian and minority ethnic communities
Truswell David, & Tavera Yolanda. (2016). London: Central and North West London NHS Foundation Trust.
An information pack developed to help clinicians and support staff working in CNWL Memory Clinics in five West London boroughs to provide relevant information to people from black and minority ethnic (BME) communities who are living with dementia. It contains information on websites and online resources providing general information on dementia; includes links to audio-visual material in a variety of languages; and advice and information on working with interpreters. Information on local demographics and dementia prevalence in the five London boroughs of Brent, Harrow, Hillingdon, Kensington & Chelsea, and Westminster are also included.
Useful links Open
The Alzheimer’s Society produces over 80 factsheets on all sorts of topics related to dementia, including this one on Learning disabilities and dementia (430) and two easy-read factsheets aimed at people with learning disabilities on What is dementia? (ER1) and Supporting a person with dementia (ER2)..
BILT: British Institute of Learning Disabilities
This national charity produces a range of publications on learning disabilities and dementia, all of which cost, including ‘Down’s syndrome and dementia’ (for professionals), ‘About dementia’ (for people with learning disabilities) and ‘About my friend’ (for friends of people with Downs’s syndrome and dementia).
Dementia and people with intellectual disabilities
This 2015 guide from the British Psychological Society and Royal College of Psychiatrists covers a wide range of issues including assessment, diagnosis, interventions and support of people with intellectual disabilities who develop dementia.
Do you recognise pain in someone with a learning difficulty and dementia?
This is a set of resources produced by the Joseph Rowntree Foundation in 2008 to help care staff, GPs and carers to recognise and treat pain in people who have a learning difficulty and dementia.
Younger people with dementia: living well with your diagnosis
This substantial 2013 resource from NHS Health Scotland was developed in partnership with younger people with dementia and carers and covers a range of key information areas (such as home, health, independence, work and money) and includes a section on ‘Caring for someone with a learning disability and dementia’.