The experiences of stigma in diverse communities

September 15, 2021

Written by Mutsai Hove Bird, Admiral Nurse on our Dementia Helpline.

During World Alzheimer’s Month we are raising awareness of the stigma that affects many people with Alzheimer’s disease and their loved ones. There are many misconceptions about dementia which exist in every corner of society. However, stigma and misconceptions can be higher amongst diverse Black, Asian and minority ethnic populations. This stigma can stop people from seeking a diagnosis or support which can leave families feeling overwhelmed and unsupported.

Challenges amongst Black communities

As well as various perceptions of what dementia is, there are many challenges to be encountered in relation to dementia amongst the various Black communities. While the biggest risk factor for dementia is age, the high prevalence of cardiovascular disease, hypertension and diabetes in African-Caribbean people puts them at greater risk of developing vascular dementia.

Mutsai Hove Bird chatting to fellow Admiral Nurse at Admiral Nurse Forum

Mutsai at the Admiral Nurse forum in 2019

Poor understanding of dementia

Dementia may be a new experience for some people, especially if families that migrated to the UK were of working age and did not bring older relatives. In some countries of origin, dementia is viewed more as a normal part of ageing, or it can be viewed as a punishment by God or possession by spirits. This in turn makes it an ‘unpreventable’ condition and contributes to a poor understanding of dementia and how to manage it.

Barriers to diagnosis

People living with dementia from African/African-Caribbean communities also tend to seek help later in the development of dementia. This means that they may not benefit from early diagnosis support, and often access services when the dementia is quite advanced or when there is a crisis. Barriers to diagnosis include stigma of a diagnosis, worries about being treated fairly and lack of culturally tailored services after a diagnosis.

Windrush generation

For first-generation migrants to the UK the experience of migration, and of coping with the lifetime impact of discrimination, reinforces a cultural expectation of resilience that makes individuals reluctant to seek help for health and social care problems. Most recently the Windrush generation’s experiences of racial discrimination by immigration authorities has further reinforced a perception of being discriminated against by other services, including health and social care.

Culturally tailored care

Dementia UK is committed to the delivery of person-centred, culturally tailored care to meet the dementia support needs of families and people from Black communities. Over the years, Admiral Nurses have positively contributed to working with Black, Asian and Minority Ethnic communities to help break down stigma. Dementia UK has recently appointed a Consultant Admiral Nurse for Diverse communities. We still have a lot more to learn about the full impact of dementia on Black communities and how best to offer appropriate support.

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