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Black History Month: The Challenges of Dementia in the Black Community

For Black communities in the UK there is a greater risk of dementia, but support is typically accessed later in the journey.

3 key facts about dementia for Black African and Black Caribbean people in the UK:

  1. Black African and Black Caribbean people are more likely to develop dementia and at younger ages than White people.   
  2. Black African and Black Caribbean people tend to access dementia services much later on, when they are in crisis or no longer able to cope alone.   
  3. Black African and Black Caribbean people are also less likely to receive drug treatments, take part in dementia research studies or move into a care home.  

Dementia, Stigma and Shame
According to Mohammed Rauf MBE, a leading voice in the BAME dementia space, thousands of people in the UK could be living with dementia in secret because of shame surrounding the disease.  It is because of this cultural shame that some communities, for example Urdu, Punjabi, Hindi, Gujarati and Bangla, don’t even have a word for dementia. Dementia is thought about in a derogatory way by many people in the BAME communities. Some think it is madness, possession by jinns (genie) or witchcraft, others think it may be a punishment from God.

In an interview with Alzheimer’s Society, Community leader Morcea Walker (pictured above), said, “Sometimes people say that dementia is caused by a great sin that has been committed by someone in the family many decades ago and that dementia is a punishment; God’s way of saying that you haven’t done things right. They put a faith label on it to the point that they believe that praying will heal it. So people don’t go to the doctor. But some places of worship do try to encourage their congregation to both pray and seek help and understanding.”

With all this considered, it’s not surprising then that the person with dementia and their family carers are reluctant to receive a formal diagnosis and actively seek support.

Mohammed Rauf MBE said, “Some BAME families won’t ask for additional help due to fear of prejudice from services and are reluctant to move relatives to a care home due to concerns about how that will be perceived in their community.”

He added. “Whilst BAME communities are seen to have English as a barrier to accessing services or support, it is important to recognise other social and economic barriers that exist which hinder access to the right support. Existing services are often not equipped to provide cultural competency in their support as they don’t always think there’s a need for diversity in their provision.”

The Importance of Terminology and Culture
Morcea Walker noted. “A lot of Black people don’t like the word ‘carer’ so I say to people, try using ‘helpers.’ Say ‘There’s a helper coming to the house.’ There are simple things about terminology that can make a person feel safe. There are not enough Black care workers, we have to accept that, so it’s a training issue for all carers.”

Morcea goes on to add that reminiscence is important, and you need to have people who understand. Many black people in Britain with dementia will have very different memories to those born here so photos, music and food etc should be adapted. They will remember the sights, sounds and smells of growing up in Africa or the Caribbean, so it’s important to take this into consideration.

Specific Support
Inspired by her time caring for her mother, Feyi Raimi-Abraham started her own company during lockdown to fill a gap that she felt was missing to help her Mum. Feyi couldn’t find any reminiscence products that were culturally relevant for her mother, who grew up in Trinidad so she decided to create her own. Feyi set up The Black Dementia Company to help people living with dementia from Afro-Caribbean backgrounds and has produced puzzles and activity books with imagery and topics selected specially for people with African or Caribbean heritage.

Listen to this interview where Feyi talks about why she created her company, what it’s like being the main Carer for her mother and shares her advice to other Carers.

Music and Memory
Research and lived experiences show that music can help reduce the often-distressing symptoms of dementia, such as agitation, apathy and anxiety. Music has a valuable role to play to help Carers and to enhance the quality of life for people living with dementia.

“Music imprints itself in the brain deeper than any other human experience. Music evokes emotion and emotion can bring memory. Music brings back the feeling of life when nothing else can.” Dr. Oliver Sacks

To help your loved one, play music that they can relate to. Or, if you need some inspiration, listen to Music for Dementia on 25 October at 8am, 11am and 2pm featuring music selected especially during Black History Month. You can listen online here https://m4dradio.com/ or on your Alexa or Echo Smart speaker.

Local Support for Dementia Carers
The Birmingham Carers Hub advice line is operated by Age Concern Birmingham, based in Boldmere. All members of the team have received enhanced dementia training and certificated Dementia Care training at Level 2 with Sutton Coldfield Training (SCT) to further increase their knowledge and awareness. The new service builds on existing support with the appointment of a small team of Specialist Dementia Carer Advisors. Find out more here, or information, help and advice, call 0333 006 9711 and ask to speak to one of our Specialist Dementia Carer Advisors, or email: dementiacarers@birminghamcarershub.org.uk

Birmingham Carers Hub also offers dementia carer support groups and dementia awareness training through dementia through a partnership with Forward Carers and Crossroads. To find out more, search in our What’s On calendar.